The knife you see - Ulcerative Colitis, Colectomy & Beyond

One thing I learned . . . .

2012-01-10T14:14:00.000-08:00

This post is to re-affirm that something good can come from something bad.

This is part of the way I slipped off the handcuffs underwater, escaped from the sack, and swam up to the surface.

It's also about the process and journey that I took, helped that me to look beyond the immediate horror and fear. I don't know if it would be the same for anyone else?

This is the first of a few videos that I am working on, and I hope you will find it of interest.

I made it as promotional, but I really hope it is informational as well.

Recognising the underlying cause of stress and anxiety, and taking a different stance in relation to them was important for me in changing my attitude to the medical profession and my condition.

It didn't cure the condition, but helped deal with effects of it.

Tranquility to you all.

A stoma on the Grand Canal

2011-12-01T05:48:00.001-08:00

Situated here

Mysterious.

Nothing to do with blood or guts, just to say I've been on holiday to Venice (Italy).

Still no decision on the reversal procedure. Time is running out. I still can't find a good source of information.

A venetian post

If you have just been diagnosed with Ulcerative Colitis:

2011-10-23T08:49:00.000-07:00

It is not your fault. You haven’t done anything wrong. Giveyourself a break and don’t blame yourself. As I understand it the causes ofUlcerative Colitis are still not really understood. Some say that it is yourgenetic inheritance – and no one should be blamed for that. Some say it is apsychosomatic issue – and that is not a matter for blame. I think I’m right tosay that almost everyone says that it has something to do with you immunesystem. I don’t think anyone can be blamed for that either. So it is not yourfault.

The doctors do not really know why you have got Ulcerative Colitis, and in myexperience and belief they are not really quite sure how to deal with it. Thisis not said with venom but as an observation. It’s a tricky disease, and theanswers just aren’t yet there.

It’s possible that early visits to the doctor and anexamination of your symptoms might have brought forth the idea of IBS. This isdifferent. The initial strategy of your doctor will (I think I’m right insaying) be to prescribe certain anti-inflammatory pills and potions in a kindof ascending order of severity. I started with Prednisone. Other similar drugs includeAzathioprine, Mesalazine, Sulfasalazine, Balsalazide, Olsalzine. Hopefully one,or some, of these will bring about remission. There are also enemas that youadminister to yourself, and they try to get the medicine to where it is needed.

If you haven’t had one already, you will probably need to prepareyourself for a colonoscopy at some point. This is not much fun; but in factit is uncomfortable rather than painful. I found the main difficulties werepsychological. The medical profession can seem only to eager to find yetanother way to invade your privacy; but in this case it is the only wayto properly see what’s up (maybe I should change that phrase).

Whatever the origins of Ulcerative Colitis, and whateveryour temperament, I’d say that finding a way to reduce your levels of stress isgoing to be important. I think most people will agree that stress is going toaggravate the situation.

Practical things to make the day to day less stressful:

Knowwhere all the loos are in your everyday environment. You can apply for a RADAR key which will let you into locked public loos which are cleaner and easierthan the cramped public bog.

OK, I know this sounds unpleasant – but prepare forthe worst. I used to carry what I called my “shit kit” - just in case. You canalso get cards that say things like “URGENT” and explain that you need to use aloo. The idea is that you thrust it into the hands of suspicious proprietors ofcafés and shops to save time and embarrassment.

The next tip, I'm sorry to say, is not really very healthy. If you are going on ajourney, or working in an unfamiliar place where you don’t know the loosituation remember the adage “An empty Bottle Will Not Spill”. I used to eat nothing, or next to nothing, before going into such situations. I’mjust saying that is what I used to do.

Drinking alcohol makes it worse.

You are more likely to get dehydrated if you have UlcerativeColitis; because your gut is not re-absorbing the water as effectively as itshould.

Watch out for aching and swollen feet and legs as it seemsfrom reading the blogs, and from my own experience, that it’s quite common to getgout like symptoms. I’m afraid it really hurts and I never found a way roundit.

If you don’t get into remission, you may find yourself oninfliximab, a relatively new and expensive drug. It’s a recurrent 6 hourinfusion. It’s not so bad. Even if it doesn’t fix your gut it will help youraching legs. For me this was the end of the line for my gut.

The infliximab did nothing to help, and I had reached the end of the medicinal route. Gulp.

If you too are past all this, and you are facing a colectomy:

There is no denying that the prospect is terrifying and psychologically difficult. Itthreatens your self image, not to mention being radical and irrevocable. If youare faced with this possibility, find a way to look at it the most positive anduseful way you can. Please don’t allow fear and loathing to get in the way ofthe person you really are.

The reality of living as an ostomate is really not as bad asit at first seems:

You will be able to eat what you like, you won’t have toworry about the nearest loo, you won’t get colon cancer, you can never beaccused of farting in public, it won’t stop you from doing physical activities,they can’t give you a colonscopy, you won’t have to take drugs. What’s not tolike?

OK, there are things you have to reconsider:

Clothes; I think if you wear floaty dresses and such like itis going to be a lot easier. If you wear trousers and a shirt it’s moredifficult because the belt or waistband may strangulate the bag in the middle,and the upper portion can bulge weirdly. In order to solve this you need to getsome good high waisted underpants that are designed to come up over the bag.You may need to loosen your belt a little as well.

You may find, especially at first, that the whole apparatuscan come unstuck. This gets better as you get more adept at the process ofchanging it. So certainly at first I suggest that you carry spares, disposablebags, and wipes.

If you want to swim I suggest the triathlon suit. It isfantastic and nothing shows. Honestly.

I hope this is useful to someone. If anyone has otherhints why not share them here.

Musenight

2011-09-24T04:56:00.000-07:00

Brigadier Banquo

Perry Jaxman: Helloand welcome to Muse-Night, with me Perry Jaxman . It’s nearly 2 years now sincethe so called “Excision” of Christmas 2009, and in that time there’s been muchtalk of “Reconnection” by both the Pros and the Cons. To examine the various issuesaround the bloody and convoluted question of Reconnection, tonight in thestudio we have the secretary of state for self image - Vanity Blair . . .

Vanity Blair: HiPerry.

Perry Jaxman: Head of Operations on the Isle of Stoma– Brigadier Banquo . . .

Brigadier Banquo:Evening

Perry Jaxman: andCommander Brian Box of Central intelligence.

Brian Box: Hmm

Perry Jaxman: Butbefore we tackle these issues lets just take a look back at the events thathave led us here with a report from our special correspondent, Kay Taydee, wholooks back over the last 2 years:

Roll VT

Kay Taydee: It wasin October 2009 that President Arkayeff finally signed the so called “treaty ofno return” that agreed to the complete removal of the crumbling evac system,and the building of a new terminal on the Isle Of stoma.

At that time I interviewed a haggard but defiant dissidentleader; Lieutenant R.Sole about the hated treaty.

(Archive footage of Lieutenant R Sole)

“It’s not just about the evac system, although I believethat with proper maintenance the system can be saved . . . I think there’sanother 30 years of service to be had . . . but more than that it’s aboutdefending our dignity . . . our sovereign identity. We’ve been let down by President Arkayeff . . . it’s abetrayal – a bloody betrayal . ..and I pledge that whatever happens we – the republic of the free will neversurrender!”

But despite those impassioned words, on 22nd December 2009the troops and the hardware went in, and forcibly removed the evac system.President Arkayeff appeared inpublic, but despite the brave front it was clear that he was weakened. Hereseen looking frail and tired he tried to fool the world by walking – slowly –200 yards along a road.

At the time I managed to get secret and exclusive access tothe militarised zone:

Archive footage of Kay Taydee wearing flack jacket andhelmet in military helicopter:

“It’s now three days since what is becoming known as TheExcision. Below me a long red and angry scar that stretches from Mount Sternumto the southern reaches of The Naval Plateau. I can clearly see the steel glintof staples that hold the fragile east-west fault together. Without them theentire state would literally fall apart. To the east of the ancient city ofUmbilicus lies a strange new world . . .

And I was able to gain secret access to that strange newworld a couple of days later. An entirely new city had been constructed in thedesert. In effect a new evac system had been built – the controversial,expensive, and man-made Isle Of Stoma.

And to this day it remains a focus of controversy, loved by many for bringingnew life and energy; a permanent reminder to others of submission andhumiliation. The Isle Of Stoma remains, a sensitive subject. And throughout itsshort history one big question remains: Should it stay or should it go?

This is Kay Taydee, from the ancient city of Umbilicus for Muse-Night.

Studio:

Perry Jaxman: Sothere we have it Brigadier Banquo – The Isle Of Stoma – a mark of submissionand humiliation.

Brigadier Banquo: Noat all, not at all. The Isle Of Stoma is nothing of the sort; it’s a mark ofresilience and survival, and we should be proud of it. A fully functional evacservice; integrated with every other system, allowing freedom and independence.That is the truth about The Isle Of Stoma

Perry Jaxman: VanityBlair. . . . something to be proud of?

Vanity Blair: I meanC’mon. This is feeble nonsense isn’t it? We’ve thrown our inheritance down thesewers, that’s the truth. Am I the only one who remembers the sight of our boysstanding to attention on the deck as we steamed into harbour? Our own flag runup the mast? We’ve given all that away for this filthy mudbath of a city. . .

Brigadier Banquo: Isimply can’t let poppycock like that pass, it’s filthy work but someone has todo it. No choice. That’s simply the nature of the beast. . .

Vanity Blair: TheIsle Of Stoma is an affront; an affront to our image, an affront to our nature,and an affront to our society. You talk about independence Brigadier, but youknow only too well that without outside supplies your operation would leak likea sieve and stink to high heaven. . .

Perry Jaxman: It’s abloody mess isn’t it Brigadier. . .

Brigadier Banquo: Itis this kind of body fascism and nonsense - this trite obsession with thesurface of things, that holds usback. If we want to move forward we need to move on. Forget about the old evac – it was scuppered,kaput, and the ship was about to give up the ghost. We’ve got a new, efficient way of dealing with that. Let me get on with keeping you alive, while you go shopping and looking in mirrors. You talk toughMr Vanity Blair, but in reality you are about as rough as a frilly collar.

Perry Jaxman: You’revery quiet Commander, what should we do here? You were in command at the timeof The Excision, and now you’re the head of Central intelligence, so you shouldknow the answer shouldn’t you?

Commander Brian Box:Simply don’t get it do you. . . It doesn’t matter what decision we make. . .

Perry Jaxman: Howso?

Commander Brian Box:We can’t know . . . the future. . .

Vanity Blair: It’swell known, Commander, that you have gone all spiritual on us in the last yearor so. . . but surely as the head of central intelligence you shouldknow future.

Commander Brian Box:I presume by spiritual you mean my interest in the power of the mind . . . .well at least I’m talking about our best organ. Never mind your boys standingto attention on the deck. . . as for intelligence – there is none. The truthis: no one knows; doctors, internet, even people who’ve been through it all . .. . they don’t know what’s best. . . and since the outcome is unknowable theactual decision taken doesn’t matter.

Perry Jaxman: Asomewhat fatalistic point of view wouldn’t you say Brigadier?

Brigadier Banquo: Ihave fought on enough battle fields, and been stabbed in the back often enoughto know that even at the eleventh hour you have to knuckle down and brassup. If you, Commander, wish to resign yourself to the sly threads of fate, andyou Mr Vanity Blair are, and more concerned about our image at all cost, thengood luck to both of you. In the meantime I’m keeping this ship running. I knowmy duty.

Commander Brian Box: Bravewords Brigadier, and I applaud you for your passion. You remind me of a man Ionce knew. And do you know where he is now? In the bilges as we speak. Yesthat’s right. Lieutenant R. Sole.

Vanity Blair:Traitor!

Commander Brian Box:Best bloody R. Sole we ever had.

Perry Jaxman:Gentlemen please!

Brigadier Banquo:It’s an important point - At least R. Sole had some guts.

Perry Jaxman: Lastword to you Vanity Blair. . .

Vanity Blair: Look. Theother day I sat in a restaurant with a much loved friend and she asked me whyself-image mattered. After all, she said, no one in this room has the slightestclue. That’s not true I said. You do, and so do I and that is anaffront. . . . . Look . . . . All I’m saying that we’ve taken the first step ona journey. We are too far stepped in blood now to return. You, Brigadier,should surely know that. You talk about guts? The brigadier won’t screw hiscourage to the sticking point in case we fail. As for you Commander, time isrunning out – hear the bell – for it summons us all to heaven or to . . .

Perry Jaxman: Thankyou Gentlemen, that’s all we have time for. I’m sure we’ll get lots ofcorrespondence on this.

The Voyage

2011-08-07T03:54:00.000-07:00

Commander Brian Box.

1997:

Petty Officer R Sole:

Red alert! Red Alert! Emergency waste evac in 40. . . 39 . . . 38 . . .

Commander Brian Box:

Override that Petty Officer Sole! Now! We are working! This is no time for emergency evac. Override! I say again Override!

Petty Officer R Sole:

Sorry sir! I tried that Sir! Override has malfunctioned , evac in 32 . . . 31 . . .30. . .

Commander Brian Box:

Code Red. This is not a drill. Sound the Klaxon! All systems – Code red. GPS plot a course to the nearest loo.

GPS:

Nearest loo in 1 minute 14 seconds sir.

Petty Officer R Sole:

28 . . . 27 . . . 26 . . .

Commander Brian Box:

Legs? Status?

Legs:

Sorry sir, we are at full tilt now Sir.

Commander Brian Box:

All Systems! Heads up! We need alternatives – NOW!

Obs:

Building skip ahead Sir.

Commander Brian Box:

Legs!

Legs:

On it Sir!

Petty Officer R Sole:

14 . . . 13. . .

Commander Brian Box:

Hans! Get ready with the belt!

Legs:

In the skip Sir!

Commander Brian Box:

Hans! Belt!

Hans:

Oh God! Oh God!

Petty Officer R Sole:

8 . . . 7 . . .

Commander Brian Box:

Hans! What are you playing at? Belt! We’re going down for Christ’s Sake!

Hans:

Sorry Sir! Can’t . . .

Commander Brian Box:

Forget it! Trousers! Hans! Trousers!

Petty Officer R Sole:

3 . . . 2. . .

Commander Brian Box:

HANS!

Petty Officer R Sole:

1. . Evac commencing. . . .

Legs:

Oh my God!

Commander Brian Box:

Jesus! Turn off that Klaxon. What the hell was that! Security! Arrest - Petty Officer R Sole and Warrant Officer Hans and bring them to my office – NOW! . . Well done legs. . .

Legs:

Thank you Sir.

Commander Brian Box:

Get us out of here will you.

Legs:

Sir.

5 Years Later:

Commander Brian Box:

OK so lets review the plan: Objective – shopping here, here and . . . here. Obs; What’s the situation out there?

Obs:

Three Loos en route to shopping centre Sir: Nags Head, The Elbow Café, then a bit of a gap until we get to The Yorker Sir.

Commander Brian Box:

Legs, what’s the time frame in the gap?

Legs:

2 Minutes 13 Seconds Sir, 1 Minute 58 tops. . .

Commander Brian Box:

Hans?

Hans:

Shit Kit stowed, spare clothing stowed, Buckle on hole 3, last emergency deployment was 7 seconds Sir.

Commander Brian Box:

OK, Sargent R Sole, slightest hint of trouble sound the klaxon, Legs immediate diversion, GPS I want constant position info on my screen at all times. In the event of emergency in the shopping centre we’ll divert to the House of Fraser, floor 1, OK lets do this!

2 Years Later:

Security:

Can I have a word Sir.

Commander Brian Box:

Of course, close the door, take a seat. Now what can I do for you?

Security:

Sir, I think we have a traitor Sir.

Commander Brian Box:

What!?

Security:

It’s Legs Sir, I think he’s been tampering with the evac system Sir.

Commander Brian Box:

Legs? Not Legs! He’s been the best bloody transport officer I could wish for. Not Legs.

Security:
I got a report from our boys in white Sir, they’ve been watching him for some time. He shows up on their screen as . . . an alien Sir.

Commander Brian Box:

Alien?

Security:

Look at this print out Sir.

Commander Brian Box:

I can’t believe this. What do you recommend?

Security:

We are going to have to reject him Sir. Nothing short of that. Sorry Sir.

Commander Brian Box:

This is madness. How . . . how will you do it?

Security:

Our boys in white will have him sir, they’ll attack immediately. There will be swelling I’m afraid Sir, he won’t be able to run anymore, nowhere for him to hide Sir.

Commander Brian Box:

Shit!

Security:

Yes Sir, Sorry Sir

Commander Brian Box:

Very well. Carry on. Oh and could you tell comms to disconnect him from me please. I don’t want to hear . . .

Security:

Sir.

3 Years Later:

Commander Brian Box:

I’ve got some bad news for all of you I’m afraid, so brace yourselves, Particularly you Lieutenant R. Sole. We are going to be on TV. . . Well specifically you Lieutenant.

Lieutenant R. Sole

Sir?

Commander Brian Box:

Your going to have to . . . let them – A team of UN inspectors - see the evac System.

Lieutenant R. Sole

But that’s Classified, Sir. They can’t . . .

Commander Brian Box:

I’m afraid we have no choice

Lieutenant R. Sole

I won’t Sir! I’ll not let them pass. It’s against my Religion Sir.

Commander Brian Box:

I’m in charge round here Lieutenant! Do you hear me! I won’t have insubordination from the likes of you! Don’t you get it! This ship is dieing! We thought it was Legs, but it wasn’t. We’ve tried everything! Nothing works! There are weapons of mass destruction somewhere in the system. Seems the most likely hiding place is in the evac. You are going to let the UN patrol in. Do you hear me R. Sole? That's an Order!

Lieutenant R. Sole

I’m Sorry Sir, I’m afraid that’s a negative Sir, that’s an order I can’t obey. I conscientiously Object Sir! You Can’t make me!

Commander Brian Box:

Security! Place Lieutenant R. Sole under arrest. He’s suspended from duty!

3 Years later:

Lieutenant R. Sole:

You sent for me Sir?

Commander Brian Box:

Yes. Come in. Close the door. Sit down.

Lieutenant R. Sole:

I’d rather stand Sir.

Commander Brian Box:

As you wish. As you wish. What do you understand by the term “duty” Lieutenant?

Lieutenant R. Sole:

Unconditional charge of care to the ship and it’s crew Sir.

Commander Brian Box

Well put, Lieutenant. And sacrifice? How do you feel about that Lieutenant?

Lieutenant R. Sole:

Sacrifice Sir. . . Well it comes with the job Sir.

Commander Brian Box

Uncannily well put, Lieutenant. I’m afraid I’m going to have to ask you to make a very big sacrifice. It won’t be easy, but the ship, the crew, all of us are going to have to rely on you. We've had our differences sometimes in the past I know. . .

Lieutenant R. Sole:

Yes Sir, I’m sorry Sir. . .

Commander Brian Box

Think nothing of it. I respect your integrity, and that’s all behind us now. I’m Sorry Lieutenant but I’m going to have to ask you - with regret- to make what may be the ultimate Sacrifice. Do sit down please. . . I have to tell you something – man to man. They are. . . they are going to take out the evac system. (Silence)

Lieutenant R. Sole:

But Sir. . . how will . . . I mean . . . I don’t know what to say Sir.

Commander Brian Box

They are going to take it out, and they are going to divert everything out of the Isle of Stoma.

Lieutenant R. Sole:

Isle Of Stoma Sir? Never heard of it . . . You cant just . . .

Commander Brian Box

It’s a new docking terminal they are gong to build. Listen. . . the evac is shot, kaput, broken. We are all going to die if we keep the evac. We have no choice Lieutenant. And I’m afraid that means that you will be – disconnected.

Lieutenant R. Sole

After all I’ve done! I don’t believe this is happening to me. I’ll be . . . I’ll be down there in an empty bilge all by myself.

Commander Brian Box

I’m sorry Lieutenant, we have no choice. . . I’m really very sorry. But listen Lieutenant, you will still be there, holding the fort so to speak. There is a chance, a slim chance, that you might be reconnected. In a year or so . . . In the meantime. . . I’m afraid it’s goodbye Lieutenant.

To be continued . . .

The advantage of having a stoma is . . .

2011-07-02T06:18:00.000-07:00

Coldplay

Don McLean

Paul Simon

For those who might read this without knowing of Glastonbury Festival (I notice some readers from such exotic places as the U.S., Canada, Sweden, Finland, France, Saudi Arabia, South Korea, India, and Italy) I should perhaps explain this odd British phenomenon.

Every year a huge quantity of people – over 150,000 in fact, cram themselves into a farm near Glastonbury in Wiltshire to woop and scream their way through musical performances from some big and less well known names in rock and roll, comedy and caberet. This year for example: BB King, Don McLean, The Kaiser Chiefs, Pulp, U2 Coldplay and many many more.

Punters camp in tents that they bring themselves, and as it often rains they churn the entire farm into a sea of mud. They also consume huge quantities of food and drink; all of which will inevitably make it’s way through a thousand miles of guts and must, ultimately be “dumped” somewhere. The result is the messiest, love filled, “shlittle”* of humanity you have ever seen.

The purpose of this post is simply to say that having a stoma does not exclude you from taking part. For the first time in my life I am legally defined as disabled; so we could camp in the disabled field, which was less muddy and had slightly better (bigger and less dirty) loos.

Here I learned that there are advantages to having a stoma, in such a situation. One can do everything standing up; thus not having to lower oneself on to the fetid loo seat above the stinking midden of the Glastonbury bog.

It may be a little extreme to have your guts ripped out just so you can go to Glastonbury festival and never sit upon the loo, but I feel one should celebrate the positives of every predicament one faces.

There was some excellent music as well. Personally I loved BB King, the Kaiser chiefs, John Hegley, and Coldplay. U2 were slick and polished, and Elbow made a great contact with the audience.

*Shlittle is one of a number of invented words. It describes an over filled, out of control flow of any substance through a narrowing.

Life is for living.

Dance Your Own Jig

2011-05-16T06:00:00.000-07:00

How does everything fit together?

Do you sometimes feel that your skin doesn’t fit?
That the arms are too long,
or the legs are too short.
That the eye-holes are tight and itch just a bit
That your hands are on backwards,
and your hair’s the wrong sort?

Do not heed to the teasing,
You can fly like a fish.
Do not weep for the wanting,
you're as wise as a stone.

Find the keys you are missing,
Be as big as a beetle.
Wear what you want to,
Be a cat with a bone.

If the words in your heart are friendly and true,
but sharp words come out,
and break at your feet.

If you've looked in a mirror
and a stranger stared back
If outside you are scruffy,
but inside you're neat.

Do not wish to be wanted,
Be as brave as a chicken.
Do not cry if you loose,
Be as bold as a duck.

Don’t hide in the shadow,
Be as bright as a spider.
Play the jazz that you want to,
Break a mirror for luck.

If you once had wings,
but were taught not to fly,
Or a heart like a drum,
too big and too loud,

Or a song in your head,
but were too shy to hum.
Or hate to be part of a crowd.

Never mind what they say,
Sing the song of the lizard.
Do not care who is looking,
Dance the dance of a snail.

Find the words you were seeking
Soar like a pig;
Hear your own fiddle,
And dance your own jig.

(©Roger Knott-Fayle)

Mind body split

2011-05-05T04:34:00.000-07:00

I blame Descartes; for it was he that concluded that the mind and body were separate. According to Descartes physical things such as hat-stands, blancmanges, and houses have “extension” in various directions into the physical world. Thoughts, however, do not.

The mind according to Descartes is a non-physical thing that thinks; and is entirely separate from the body.

This causes a problem though, because clearly the mind can have an effect on the body. Think of a lemon and your mouth may water, think of your fingernails being pulled off and your heart rate may rise, think of jelly down your trousers and you may start to laugh.

But how can this non physical thing have a causal effect on the physical body? This is the so called "problem of interactionism." It was thrown up (if that is the right word) by Descarte’s (Where to put the apostrophe?) musings on the split between mind and body. It caused him a problem because undermined his theory. Merde! Combien incommode!

In order to fix this glitch Descartes decided that animals were in fact automata, and that us humans were different as we possess the pineal gland located the centre of the brain between the two hemispheres. The only part of the brain not duplicated. He, incorrectly, believed that animals did not have the pineal. Others tried to resolve the matter by arguing that mind / body interactions were the result of interventions by God -no less.

At this point I think we can see the mess that splitting ourselves in two can lead to.

Common experience demonstrates to us that there is a great connection between the mind and the body. We know, for example, that anticipation of a difficult experience can make the heart beat faster, your armpits and forehead sweat, and bring about the urge to find a loo.

In some eastern philosophies the mind body split does not seem to appear so much. I believe that Buddhism talks of mind body unity although I’m not sure about this. In western medicine we have stitched ourselves together rather cruelly by using the word Psychsomatic.

There is still debate as to whether Ulcerative Colitis, for example, is a psychosomatic illness. For example in 1983 Milton Rosenbaum MD wrote a paper (Ulcerative colitis, Psychosomatic illness review: No. 10 in a series) in which he says there is extensive clinical evidence which shows that in someone who suffers from Ulcerative Colitis, emotions and personality will play a large part. In particular he suggests that there are intrapsychic conflicts which lead to regression to anal behaviour, and dependant immature emotional relationships – especially with Mum. Thanks mate.

The difficulty with this kind of description is that it appears to be a bit judgemental, and implies blame. Maybe it is because words like immature are considered, in ordinary language, to be insulting. In medical language it may be a precise term.

Thinking of my own experiences, and trying to see beyond the language I’m starting to wonder whether there is some truth in this. Only recently in my mid 50’s have I started to realise that I may actually have abandonment issues.

At the age of 7 I was sent to a boarding school. Nothing has frightened and hurt so much since. The sight of our clapped out grey Cortina disappearing down the school drive, and the feeling of undiluted fear is seared into my being. Add to this the fact that my home was in the same village, and that I could actually see Dad driving the tractor about the place, see the house I called home, yet I could not go there, was a Tantalus too far.

In the Journal of Psychology, 2004, 49, 683 – 705, Joy Schavarien has an article entitled “Boarding School: The trauma of the privileged child”. This articulates very well the strange schism I felt. In particular, the difficulty of balancing the idea that this experience was an expression by my parents of how much they cared for me. That in being rejected I was loved. That they were sacrificing so much to send us all to good schools was hard to understand.

At such a school there is a really inconsistent view of the relationship between the mind and the body. On the one hand they are separate; physical weakness and pain can be simply ignored by a disciplined mind. On the other hand they are intimately connected; a mind that is weak and feeble can be fixed by physical punishment.

A track or a trace is left in the mind, a habitual way of thinking, a stream of self-doubt, a morbid fear of authority, a fractured resistance.

You know how when you are scared you feel it in your guts, like a serpent writhing inside. I felt that a lot, not just at school but often afterwards. I certainly was, and maybe still am, a little unsteady.

I’m not suggesting that everyone else with UC has necessarily got the same kind of connection. That is for each individual to decide. For myself I think there is.

My speculation is that these experiences, in conjunction with my genetic inheritance, may have been at the root of my Ulcerative Colitis.

Furthermore I speculate that by a harmonious balance between mind and body, both will benefit.

What next? To pouch or not to pouch?

2011-04-24T03:19:00.000-07:00

Going backwards to go forwards? or going forwards in reverse? The old question of whether to undergo the reversal procedure or not is a vexed and complex one.

I should perhaps say, that I’m starting from where I am now, a 55 year old man with an ileostomy. If, as a 40 year old I was to have met myself as who I am now I would have been repulsed and very upset.That would have been more a matter of ignorance than judgement.

I just want to assure you, if you are facing the prospect of colectomy, that there is a good life afterwards to be had. Don’t despair! That is really important.

OK, that out if the way, let’s imagine there’s to be an election, (not sure what counting system we will use) but we are asked to rank the following in order of preferred life choice:

A: Get that bloody knife away from me – I’ve had quite enough of that and I’m happy as I am.

B: Yes please! reverse me at your earliest possible convenience.

C: It really hurts sitting on this fence!

In favour of option A:

The stoma’s not so bad, once you get over the psychological hurdle and accept yourself as you are. You can do everything you want to do – swim, cycle, walk, camp, go to parties, give lectures, take part in film making, enjoy curry houses, travel to exotic countries, and hypnotise people. I haven’t really had any problems; and certainly nothing as bad as having ulcerative colitis.

In this scenario you can’t ever get bowel cancer, and you can’t have ulcerative colitis. Your joints don’t swell up any more. No meds, preds, infliximab, steroids, colonoscopies, bog-trotting, chow-checking or buttock clenching. What’s not to like?

Problems with A:

You are reliant on surgical apparatus (which, at least in the UK, is given to you free of charge), without "the stuff" you are in fact incontinent. You can’t walk around without a shirt on. Romance, sex and nude performances of any kind are . . . difficult.

In favour of B:

Physical normality – oh yes please . . . I mean YES PLEASE! Oh to be aesthetically normal! It may be a trivial and entirely cosmetic concern but YES PLEASE!

The possibility of being “normal”, (I know –“whatever that is”) is a strong draw. To be free of what is legally a disability (although I don’t label myself as such) would be amazing, and to have something that functions properly, and is internal would be (to use modern parlance) totally awesome.

Oh to be free of all the baggage, the hair pulling adhesive, the creams, the early morning rumbling, the rare but unfortunate apparatus malfunction, oh yes please. YES PLEASE!

Problems with B:

Two more operations (in my case). That’s the first big thing to keep in mind, and as with all surgery there is a level of risk and even death. Getting a knife in the guts is dangerous; less so in modern times and in technologically advanced societies, but still dangerous.

Accepting and excepting the risk, the two operations are:

First – pouch construction- being a fairly major re-arrangement of your innards. Leaving you with a special ileostomy, and an internal pouch which is not connected but simply allowed to heal for a few months. Before continuing you will need to be tested to make sure your pouch is healthy and secure; the so called pouchagram. Which is a bit like the colonoscopy.

The second operation – the actual connection of the internal pouch- is comparatively straightforward. HOWEVER The consequences of B form the basis of C

C – ah! here’s the real rub.

If you go ahead, you have to be prepared for the long game. Operation 1 then three to six months then operation 2, then a year to let everything settle into place. So really that’s probably around a year and a half with some increased level of day to day difficulty.

I have read that immediately after the reconnection you could be bog trotting around 20 times a day, and that over the next year this should reduce to between 4 and 6 times a day.

It seems that there is likelihood of – dreadful but functional phrase – “butt burn”. This is caused by the fact that the digestive juices and acids are not dealt with by the pouch in the same way that a colon does, and therefore can burn your bum. It seems to me that frequent and extensive ablutions would sort this out. That’s OK I love bathing.

It also seems that your diet is going to be limited to some degree. Say goodbye to the spicy chicken and cashew nut, the brinjal pickle and the chilli sauce, even the innocent old colonel mustard may present a problem. Add to that a deep suspicion of any veg with a shiny or waxy skin, and you are starting to approach a limited cuisine. But maybe that’s OK if you’ve got your arse back.

The real problem is that it is really hard to get clear objective knowledge of the risk factor.

I went to my Doc the other day, he’s a good bloke, and a very experienced GP. I asked him where I might drink from a good source of information. He brought up Google and after a few taps recommended “NHS Choices”. He was in the same boat as me it seemed.

He did say that as part of any consent procedure I should ask my surgeon about the risk factor I faced, what his success rate is, and how many complications and surgical mis-snips he has. The thing is, I want a good overall picture before we get to that conversation. General ignorance accompanied me into the theatre for the colectomy, but then I didn’t really have choice.

I have found some information on the internet which you may wish to look at; search for “Ileoanal reservoir guide” or take a look at

www.ostomy.org/ostomy_info/pubs/IleoanalReservoirGuide.pdf

www.fowusa.org/newsite/pdf/UOAIleoanalGuide.pdf

http://www.j-pouch.org/diet.html

http://www.cheltenham-colorectal.org.uk/Patient_information.html (and choose ileoanal pouch)

As always it is important to remember that no one thing you read is the whole truth, and therefore not to over react to what you read.

For example I got quite disturbed reading a study of 58 people whose problems started with Ulcerative Colitis; 23 of whom had J pouch construction surgery. The outcomes were:

1 Death

4 Pelvic Sepsis

2 Bowel construction

1 Leaky internal pouch

3 wound sepsis

9 anastomic stricture (Narrowing, usually by scarring, of an anastomotic suture line.)

5 Pouchitis

3 incontinence

To read this pdf click here. It's called

"OUTCOME OF POUCH SURGERY FOR ULCERATIVE COLITIS: SINGLE CENTER EXPERIENCE."

Ahmed Abdel-Raouf, Mohamed El-Hemaly, Tarek Salah, Emad Hamdy, Omar Fathy, Nabeih Anwar, Ahmed Sultan

Gastroenterology center, Mansoura University, Egypt, 2008

Doesn’t sound good does it; but it’s not the whole picture, I may have too little medical knowledge to understand what I’m reading, I don’t know how Egypt and UK compare in terms of surgery, and I don’t know if there is a hidden agenda in the paper. One study isn’t the whole picture.

So it’s just more info to add to C

By the way I did hear from Martin (numbertwos) a while ago whose description of success with the operation seemed fabulous. He was pretty well back to normal, but then he’s younger, and had a different operation and started from a colostomy not an ileostomy. . .

So the wheel continues to turn.

Listen; I have to go and mend Clare’s puncture – on her bicycle I should add.

Be well.

A Very Brief History Of Ulcerative Colitis

2011-04-07T00:30:00.000-07:00

A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.

Hippocrates

Natural forces within us are the true healers of disease.

Hippocrates

Whenever a doctor cannot do good, he must be kept from doing harm.

Hippocrates

I have often wondered about the history of Ulcerative Colitis. I mean these things don’t just suddenly appear do they? It must have been with us a long long time. So here is a brief stitching (Frankenstein style) of what I found when I went on a little search around the internet.

The first description of Ulcerative Colitis dates back to 640 BC and many physicians up to 170 AD including Hippocrates described a condition with a type of chronic diarrhea associated with blood and ulcerations of the bowel.

There are some suggestions that Bonnie Prince Charlie – the young pretender may have had Ulcerative Colitis, which was aggravated by milk. This casts quite a different image of him, quite at odds with the rather dashing figure of history, film and folklore.

The Surgeon General of the Union Army, during the American Civil War, referred to Ulcerative colitis.
Colitis as a specific pathology was first described by Wilks and Moxon in 1875; they called it "Inflammation of the large intestine or idiopathic colitis".

During the 1920s “colitis” was a strangely popular (amongst doctors) diagnosis, for a wide range of gut stuttering diseases. The number of individuals suffering from colitis increased steadily until the 1980s, after which the number has leveled out. Most recent reports show a kind of see saw effect, in which as the number of people with Ulcerative colitis decreases, the number of people with Crohn’s increases.

Crohn's disease was recognised as a unique and separate entity on May 13, 1932, (I don’t know the exact time) as this is when Dr. Crohn presented the paper on "Terminal Ileitis" to the American Medical Association.

In 1930, it seems, Ulcerative Colitis was seen as primarily a psychosomatic disease. I have strong views about this label as it seems to make the disease the fault of the sufferer.

It’s interesting that this view seems to have kind of coincided with the increasing popularity of psychoanalysis. Now, I’m not saying there isn’t an interplay between mind and body, I’m sure there is. I just find it annoying that this view seems to imply some kind of judgment about the person as being feeble minded or hyper sensitive or weak.

(OK I’m going to step down from this particular soap box now before I get high blood pressure.)

The mind / Body debate continued for many years. In 1962 a paper entitled “Three Decades in the Observation and Treatment of Ulcerative Colitis” was published and here is an extract of an abstract of it:

“Whenever possible, the patients were interviewed psychiatrically by one observer; when this was not possible, data were obtained by means of a detailed questionnaire and correspondence. Abstracts of all data were computed by this one investigator for uniformity. Findings were systematically reviewed with respect to psychiatric diagnoses and changes in status.

The psychiatric diagnosis proved to be a most reliable variable in prognosis for both the mental and physical status. More than half of the patients coming to operation and almost two-thirds of those who died were diagnosed as having schizophrenia although schizophrenics comprised only one-third of the total group.”

(http://www.psychosomaticmedicine.org/content/24/1/85.abstract)

The current view of UC doesn’t seem to purport know the cause,dancing around the three corners of a medical hat labeled "psychology", "genetics", and "environment".

In the supermarket, the other day, the self checkout’s electronic voice intoned at me.

“Unexpected item in bagging area”

“Your telling me” I muttered.

http://www.medindia.net/patients/patientinfo/ulcerative-colitis.htm#ixzz0nQnJiz00

http://www.bmj.com/content/2/5261/1226.3.extract

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2466707/?page=1

Gentle Reader. . .

2011-03-30T02:22:00.000-07:00

A largely irrelevant picture

A bit of a strange collection of thoughts here, but come with me, if you will, out of the city, up the path and over the hill and down to the water’s edge.

I try to imagine you; as you read, eyes jumping from word to word. Outside the window, maybe a city, or a lake, or a desert or perhaps a small town near the sea. Who knows. . .

I wonder what questions you have and what brought you here, and where you are on your journey. Your journey is always and only your journey, and this is mine and mine alone.

My room is a dark one in the centre of the house, but light filters in through the music room and is diffused by the curtains Clare has put up. I have a fireplace and a mantelpiece. Two reclining leather chairs, a worn out rug that needs chucking away and a load of boxes containing lights, cameras, electrical junk, magazines, photos, and . . . well a lot of junk I suppose; stuff I find interesting.

I wonder what kind of room you read me in. What sounds seep up the stair or in from the street, or out of your computer. I wonder what questions you are trying to answer, or what function reading a blog can have for you?

Some people must get here by accident and others are specifically searching. Some seeking to buy a hunting knife may suddenly find themselves here and wonder what all this crap has to do with the adventure they plan. Others may be seeking answers questions like what is life like after a colectomy, what is butt burn, what is surgery like and how do you deal with it. Some may seek an optical device with very sharp focus.

I read other people’s blogs as you can see from the side panel. Speaking for myself, at first I read them for information, scouring the net for signs and clues as to the path that I would take. I now realise it is not for information. It is to visualise other people and understand how others – you – deal with the dread disease.

In our separate journey’s I look for something common to us, some sign that we can survive and overcome and step forward.

I think it is mostly for connection. I think that’s why I read them. That and the fact that I’m a bit nosey to be honest.

Anyway you see the question I pose

“What are we looking for?”

It is with great pleasure. . .

2011-03-21T23:10:00.000-07:00

You may, if you've been reading my blog for a while,remember that as a result of the dread gut disease I became interested in Hypnotherapy.

The other day we were presented with our certificates. I am very satisfied and excited about this.

New things from bad things.

I am now a qualified Hypnotherapist.

If you'd like to see my website - here is the address.

http://www.hypnottik.com/

An almond, and the world.

2011-03-14T04:43:00.000-07:00

In The Souk

“La Personne citée sur ca certificat a subi une opéeartion churgicale pour retirer le colon et a une iléostomie . . . .”

“. . .Se fosse necesarrio esaminere la sacce, é richiesta la presenza di medico qaulificato . . .”

“ . . .Cualquier interferencia puede causer fugas y que la persona sufra molestias e incomodidad. . .”

The certificate firmly clasped in my hand, I stepped through the metal scanner at East Midlands Airport. No problem. Apart from the certicificate itself being scanned (unread) and I was waved through.

I had been slightly wary in anticipation of this moment for a few days now. The certificate checked and re-checked along with a letter from the doctor as often as my passport. It was the first time I had flown since my operation in 2009.

I had, in the midnight madness of dreadful dreaming, imagined being escorted to a small room and ordered to disrobe, de-bag, explain, undergo searches, and finally suffer several years of imprisonment in solitary confinement. Such is the leaping power of imagination in the dark hours.

But there was nothing to it.

Marakech is a place of smells, satellite dishes, colour, mopeds, spices, noise, snakes and monkeys. It is also hard to get away from from cous cous, chicken, olives, peppers, tagines, and salted almonds.

I love salted almonds. I love them a lot. The mysterious taste of almond which is not quite sweet or savoury. Mmmm. I wanted more and more. There is something in animal nature that knows when the body needs more of something. My mum, for example, ate coal when pregnant. There is something in almonds that I want.

After a few days of Marakech in which I am eating a low fat, low alcohol, low danger diet my body is right up to the mark.

Eventually it’s time to go home and in Marakech airport I face the security procedure again, and again I’m nervous.

I’m waved forward through the metal detector, and subjected to a thorough pat-down. I am going to jail for sure. I point out that I’m still wearing my money belt.

The man dismisses this explanation and starts feeling around my middle with methodical hands. He is giving the top of my bag a bit of a squeeze. I am feeling a rising panic about this, and reaching round to my back pocket for the travel certificate with widening eyes. This is momentarily quite invasive - I mean who wants their bags felt in public by a stranger.

“Passe” he says.

I Got home last night late, and realised that my gut was becoming blocked.

So if you are in a similar situation; don’t worry about international security, worry about the almonds.

By the way:
You can obtain a Travel Certificate from National Office. Either e-mail info@iasupport.org, or telephone IA free on 0800 0184 724

The certificate is printed in English, French, German, Greek, Italian, Portuguese, Spanish, Arabic and Chinese.

Also getting travel insurance with a medical condition is tricky; without moving into advertising I thought I would just point out this company actually know about insuring people with pre-existing conditions.

Any moment

2011-02-22T20:59:00.000-08:00

Clare brought me the phone and mouthed the word “hospital” at me. I took the phone and said hello. It was Fitch’s secretary. Did I want the operation on the 17^thof any-moment-now. I gulped a couple of times like a fish in a net. This had come out of the blue. Seems to be the way round here.

I looked at my diary and realised that my final two days of training as a Hypnotherapist would be in the way, but perhaps I could get round that. Also I had been waiting to be put in touch with someone who’d made the journey through J pouch construction.

Martin, of Number Twos has ceased his legendry transmissions from the front line. I had not met anyone. I felt that the 17^th was too soon. I needed – need- a bit more information.

I had imagined that despite two ops, and a bit of time, I was going to be fixed and as good as new. BUT then I read the forums, and scanned the net. And I realised it’s not that simple.

I did find someone to speak to on the phone who has been through it all. A very nice man with a gentle voice, and refreshingly un evangelical in either direction.

What shall I call him . . . ? Mr Jay’s description of life on the other side seemed to fall short of the ruddy duck I was –am- hoping to be. He said he was glad he’d made the decision, and gone ahead with it, but there was sand in the Vaseline.

"Butt Burn", a diet of pasta and potatoes, limited appointments with Bacchus (it’s nice to see him occasionally), eight bog stops a day. . . He did point out that forums tend to be a bit of a self selecting commentary box. . . but nevertheless. . . I realised that there are advantages to life with Banquo. An insight in itself.

Is it vanity that drives me to be prepared to submit to the masked man in green pyjamas a further two times? I’m not sure I know the answer.

Occasionally, not often, Banquo will shake his gory locks and embark on an unscripted soliloquy. He does occasionally protest at quiet moments in certain films, and has once or twice tried join in with a hypnotism. Mostly though, he keeps his council.

I don’t want to pollute your mind with uncalled for imagery, but even I sometimes want to anoint my body with scented oils, slip into something more comfortable, turn down the lights, slip a little Mantovani onto the turn table. Advance upon a lover like Lesley Phillips. That’s part of life isn’t it. I might one day, want to actually get a tan on the French Riviera, or sit around a pool sipping a long cold drink in nothing but budgie-smugglers and a smirk.

I wasn’t planning to start performing in the nude, or join a nudist colony.

But . . . Do I want to spend the rest of my existence in this un-natural state?

Then again . . .

Do I really want “butt-burn”? Do I really want to be bog trotting 8 times a day again? Do I really want to live on a bland diet of pasta and potatoes for the rest of my mortal?

I agree with Mr. Jay; if you are having a wonderful life, and everything is fine, there is no motive to post on a forum or write a blog. The result is that most of the information and first hand reportage I can find, is actually a bit off putting.

I would really like to find someone with a positive experience of reconstruction. If I find a few I will be happy to have the knife, you see.

There must be examples out there. If you are such a person; please drop me a line.

Brainwaves

2011-01-13T08:59:00.000-08:00

Catch some alpha waves.

The possibility of measuring brainwaves with an EEC machine in real time (Strange phrase) means that researchers and neuroscientists have, in recent years, been able to see our brains in different states. Pop on the strange electrode peppered skull cap, and perform certain tasks, or enter different states of consciousness and the machine can see the difference.

Did you know, you generate four distinct types of brainwave?

Beta for busy. When you are involved in vigourous rapier sharp debate, on stage, playing chess, or deeply engrossed in sodoku; that’s when you are generating beta brain waves. These waves are fast and made of little waves (small amplitude high frequency)

Alpha waves. When you relax your mind and let your body go limp, when you are moving slowly and smoothly in the moment, when you are staring at the flickering flames of a fire, or find yourself staring from the window, or in a kind of dream watching the sea. Or indeed when you are in a hypnotic trance or in meditation. That’s when you are generating Alpha waves. Stronger but slower (Bigger amplitude, lower frequency.) It’s interesting to note that you don’t have to be inert to generate alpha waves. It could happen when you are “in the flow” – cycling, walking, running, playing an instrument, etc.

Theta waves: You are asleep and dreaming, or possibly in a state of deep meditation or deep trance. Even slower frequency.

Delta waves; dreamless sleep. When you are asleep but not dreaming, when you are unconscious. Very slow frequency.

Don’t go any slower or you are dead.

Interesting, but so what? What does this mean for someone turning up for a session of hypnotherapy?

First thing to get straight is that a proper Hypnotherapist is not going to get you to run nude around the room imitating a chicken. Second thing: they couldn’t make you if you didn’t want to, in fact they can’t hypnotise you unless you want to be. Also you won’t get “stuck” in hypnosis – if nothing happened you would return to beta land in a while, and if there was an emergency you would pop back in an instant.

Research into hypnosis, hypnotherapy and neuroscience seems to fall broadly into two categories. One area is about what happens in the brain when you are in “trance” like states, and includes the study of things like the brainwaves mentioned above.

The second area is concerned with the effect of suggestions made to someone in a trance. There are hypnotic suggestions (which act during the hypnotic state such as “now I wonder if you can imagine the view from your window”) and post-hypnotic suggestions (which act after the hypnotic state is over, such as “when you next put your hand into your pocket and feel the edge of the cigarette packet you might take your hand out and decide instead to drink some cool clear water”).

So you might arrive for your session and there might be a fair amount of talk first, perhaps about the previous session, or how things are progressing, or how you feel about your presenting issue. Next there would be the hypnotic part of the session. You would be in a nice comfy chair, and you might be asked to relax and breathe more slowly, or something like that. The Hypnotherapist would probably speak a bit slower than usual, and you might close your eyes and go on a meditative journey.

This is where your brain waves would most likely change from beta to alpha waves. You probably wouldn’t fall asleep (although you could), and you would probably be actually very focused on the words and the voice and the journey. At least that’s what I experience.

In the alpha wave state you are very relaxed and receptive to ideas and connections and so on. If you were asked to imagine the colour Yellow you would probably (but not necessarily) really “see” yellow. Not the same as imagining it now while you read this. It’s also possible in this state to get rid of unwanted noise and clutter and really focus on one specific thing.

For example you might have seen this thing on some brain trainers where you have to point to the blue lettered word:

BLUE YELLOW

In our normal beta state our conscious mind is momentarily confused as it runs between two sets of conflicting data, we can’t easily turn off our automatic word reading function that we have built up with years of practice. One part of your brain is reading the word yellow, and knows it conflicts with another part of the brain which identifies the colour yellow.

It’s called the Stroop effect. But under hypnosis it might be suggested that the English words were meaningless squiggles and then it would then be easy to spot the word written in yellow, because the automatic reading would be turned off.

So if, in hypnotherapy, it was suggested that all doctors are not bad, and that you can see them as people rather than functionaries, and that next time you go to the hospital you might notice the human underneath the white coat (post hypnotic suggestion) it is possible that in reality you may well see “them” in a different light. (By the way that was my presenting issue at one point -I'm not saying that doctors are bad.)

Equally if your were relaxed into a very calm and peaceful state of consciousness, so that you were chilled as an ice cream, and then you were asked to pinch your forefinger and thumb together, you might find that afterwards, back in beta land, that if you pinched your forefinger and thumb together you might feel all calm again. (This is an anchor)

Not so weird when you think that if you heard one of your most favoured teenage tracks from way back when (that’s a long time ago for me) you might be transported back to . . . that time and place. Ahh . . .

So then, after a while, the Hypnotherapist would encourage you back into beta-land. You might be a bit “blinky” for a couple of minutes, and you might need to adjust for a short time. There would probably be some more talk at this point. You might find that you had a distorted idea of how long it all took, and it’s true that some of the details might have faded.

So if you had, for example, Ulcerative Colitis, which was being whipped up by certain stresses in your life, you can see how this might be a good way to combat the stresses. In experiencing less stress you would have less of the stress hormones in your bloodstream.

Alarm response, resistance, exhaustion. This is the stress cycle. Something worrying happens you have an alarm reaction and flood yourself with adrenaline etc. If the stressor goes away you are able to return to normality, but if it keeps going you will have to resist. So you will constantly be releasing stuff into your bloodstream and feeling bad. If you have Ulcerative Colitis, and you are stressed by this, you may have to cope with it for several years with horrible peaks of stress during flare ups. Eventually you will be exhausted. And that is not good for you.

Even just generating alpha brainwaves, or being in a situation that brings them on could, I suggest, be a very useful thing to experience.

You can also catch some alphas in many other ways:

Meditation, yoga, listening to music to name but three.

So. . .

Just thought you might be interested . . .

I’m exhausted myself now – time for a nice cup of tea.

Oh by the way - I can't see a way to the follow this blog but I reccomend http://blog.dugnorth.com/
Most fun and interesting.

A

Pants, pumping and happiness.

2010-12-20T22:05:00.000-08:00

A sample from the goody bag.

“. . . and what kind of stoma do you have?”

He’s a big man, very big. He’s standing next to a panoramic display of pouches, flanges, creams, powders, tubes, and boxes.

“Ileostomy” I answer smartly; sure of my answer.

“Come this way” he threads his way with surprising speed and agility through the milling throng of blue rinses, and sports jackets to another all encompassing display. He picks up a pouch and cradles it before me with true zeal.

“Now this. . .” he holds it up as if presenting a bottle of vintage wine “ . . . this features the AF300; the most advanced air filter on the market; filtering double the amount of air per unit of time than our nearest competitor. It’s also the pouch with the thinnest profile available, and features a unique closure unaffected by water. . .”

On the back of his rather hairy hand he has a flange taped, and is more than able, and certainly pleased to demonstrate the unique locking system. This man believes!

A woman enters the hall, lets call her Harmony, and makes a sonorous declamation “The floral display demonstration will start in two minutes in the aerobics studio”

We balance our plastic beakers of mulled wine on our Styrofoam plates full of sandwiches, volauvents and crisps as Clare and I survey the building. One of the main reasons I have accepted this courteous invitation is to get a look inside. It’s a Victorian pumping station. It used to contain two massive beam engines. It used to look something like this but now it’s the backdrop to wedding parties and the like. (Probably not funerals I don’t suppose.) Today it’s hosting a “day out” for people with stomas to enjoy “The Funny Footmen”, floral arrangment demonstrations and a wide range of surgical products for the ostomate, and a free lunch (Yes, I know).

After registering (Having your name ticked) and being given a goody bag (red with tube of mysterious cream, a biro, some post it notes, some sample fresh wipes, and two adhesive discs with an unknown purpose) we look around the room. I’m 54, but I’m quite surprised to see that I can’t see anyone my kind of age. If only I had a the uniform sweater with Pringle written on it

Climbing the thin winding stairway passage (hmm) to the top floor we are greeted by another floor full of v necked sweaters and sensible shoes grazing to the sound of a violin and a guitar.

There are various displays around the room, and I spot one that has a leaflet about reversal surgery. I hover near the table looking at the information on offer. A woman approaches me. I mention that I might be having reversal surgery sometime next year.

“ . . . and what kind of Stoma do you have?”

“Ileostomy” I say, quick as a flash.

“Oh. . . well this a colostomy organisation”

“ah . . . well it’s the reversal thing I’m interested in”

“Different with a colostomy”

“Oh.” I feel slightly odd about this conversation. “Oh well. . . “

“Not the same at all.” she fixes me with a beady eye. “Take a leaflet – if you’d really like one”

I do, Clare stows it away in her large carpet bag.

Moving on to a display of a local suppliers, a friendly woman approaches and asks if I’m happy with my suppliers. Just to clarify; there is quite a complex relationship between manufacturer, supplier, GP and one’s self. Suppliers will supply you with anything from any manufacturer, but they have to liaise with your GP via a series of prescriptions etc. I’m telling her that I’m happy with my supplier when Harmony makes another declamation:

“The floral display demonstration is scheduled to take place in the aerobics studio, but if anyone has difficulty with stairs we will move it to conference suite 6. Please come and speak to myself about this”

Then without breaking rhythm she moves towards the guitar and violin and starts to sing in a very loud operatic kind of way. The woman I was talking to is open mouthed.

“I didn’t know she could sing. . . “ The woman from the supply company is clearly dumbfounded by this transformational moment.

There’s a display of underwear, and I nudge Clare excitedly. Not that these are sheer and naughty; well cut and sturdy is nearer the mark. You, dear reader, may be in the enviable position of casually picking from a plethora of pant designs in your local shopping mall. Not so for us “baggers”

At the risk of getting into too much detail the high wasters I’ve got are good at the top end and keep everything under control. But down below . . . they aren’t – how shall I put this- they aren’t designed for a man, unless you’re a snooker player.

These look properly designed and cut. The sales rep brandishes a truncated torso model wearing the pants and encourages me to put my hand inside the pants to feel the hold they provide. I am slightly hesitant about this and slip my hand inside the pants.

“No; right down. . . go on! Right down to the crotch!” he exhorts me. They are very tight, well made. No labels and very smooth seams. In fact now that I have my hand in there I realise these are really quite superior.

“Wow! I’ll take some of these” I’m truly transported.

A couple of forms filled out and I’m looking forward to a delivery of sample pants.

It was exactly a year ago today that I went into hospital and had the surgery. The year since has taught me not to be scared and that happiness is a good pair of pants.

There is more

2010-12-11T13:46:00.000-08:00

Summer 2010, Tenby, Wales

It was the 29th of November last year when I started this Blog. I was fearful of the future, robbed of the present, hating the past. In desperate need of some way to escape from the trap that I was in.

My problem, my fear, was that the only way out meant I had to submit psychologically and physically. Notice the word submit. In my heart I knew I was beaten by a disease that seemed perfectly formed to distress me by attacking the very areas in which I have always been vulnerable.

The medical institution as I saw it: monolithic soulless architecture, inhabited by people I could not relate to, and who had the power to punish, to humiliate, to violate me; all of this reminded me of going to boarding school at the age of 7.

My disease, as it seemed, making me disgusting and robbing me of dignity, centred on a social taboo, turning me back into a baby. Reducing me to a weak and repulsive middle-aged man with little future.

The only “cure” available involved, disfiguring and medieval brutality, usually reserved for the scaffold, thinly disguised by a word that hid the truth. Not a colectomy really, I was to be disembowelled. Literally.

My family, my doctors, my friends wondered why I didn’t just head for the operating theatre and get on with it. I was scared, lonely, angry, and, frankly, stroking the cat of death.

That was a year ago. A year ago to this very day I posted a video on you tube to try and laugh in the face of death.

What I did not know was that I could get through it all, and that even at the bottom of the shittiest bucket there is something good if you are prepared to look for it.

I’m coming up to the year mark since the operation. I have learned a lot about myself and about others who have kindly and with insight commented on this blog. I've also grown through the life experiences of others that I have followed. Take a gander at the blog roll and read how people have strength and humour and intelligence, and how they deal with the problems they have.

I also found out how much my life impacted on my family and started to understand how difficult it has been for them as well.

And . . .if you too have to face the operation, I can only say that my experience taught me that the fear and loathing was worse than the reality. There is a future and it is full of possibility and colour.

Ahem . . . I thank you

(Steps down from soap box and packs up; heads away across the park)

Seasoning

2010-12-04T04:22:00.000-08:00

Click to enlarge

Picture this

2010-11-27T02:44:00.000-08:00

Previously on "The Knife You See":

As a result of having Ulcerative Colitis for 13 years, and despite medications a plenty, I faced the prospect of surgery almost exactly a year ago. In order to deal with this psychologically and to get some sense of control and calm I went to see a Hypnotherapist.

I found it so useful, that I decided to pass it on by learning to be a hypnotherapist myself. . .

I wonder if you can imagine the scenario, we are in one of those rather corporate rooms in the depths of a hotel. (Should that be an hotel?). The yellow-brown carpet with little crawly patterns made of small crosses in black stretch across the floor, the wood and chrome armed chairs with a purple seat and back, the whiteboard, the arc of chairs.

Perhaps, you can you see it?

Can you hear the air conditioning? The distant but constant traffic? The clink of iced water in the glasses? The soft scribbling noise of biro on pad? Can you hear all that?

On the whiteboard the letters “IBS” are scrawled in black sitting like the dead body of a spider in the middle of a mind map.

We’ve been talking shit for a while now, running through the symptoms, the possible causes, diet, exercise, self esteem, confidence . .

. . . U.C. is NOT IBS

I have subdued the impulse to spill my guts. Mention has not been made of Ulcerative Colitis but there’s been one mention of it’s evil twin Crohn’s disease. I have resisted the impulse to yak on about the difference between IBS (Syndrome) and IBD (Disease). Now we have been put into small groups to practice a new script.

This one is what’s called a guided imagery script. The Hypnotherapist takes you on an imaginary journey, and the things within that journey are actually encoded ideas that will influence the unconscious mind. And that in turn can influence the conscious mind and the body.

Oh! I have just noticed that UnConscious mind and UC might have something in common. . . . I have thought for a long time that the gut might be the seat of a primal and brooding intelligence.

Anyway, the script is good, I’m enjoying it and I’m getting waves of comfort and familiarity . . . . Yes familiarity is the word, the metaphor of a river, the idea of a steady constant balanced flow. That's the embedded idea.

Imagine the scene: Beautiful trees, a stream going through some woods, the stream clear and clean and sparkling. You and nature are in harmony. You take on the qualities of the stream. It’s good and it calms you down.

I’ve heard something similar before. A year ago. Hearing echoes of an old song reiterated in a new song. I like it. It comforts me.

But there's a beef for me. The thing is, with U.C. it is really good to be calm and all that, but I'm not sure that it's going to sort out your "flow".

It'll help your head, but I think your gut will still have it's own particular problem. That's why it's an IBD not an IBS.

Curious to experience a thing from the other side. In my training so far I have had quite a few instances where I remember the conversations or hypnotic techniques of my Hypnotherapist.

Personally, I found this type of metaphor very useful. Even if it did not have the exact outcome I desired (like curing my guttering entrails) I would leave the hypnotherapy feeling much calmer and more in control. That in itself was worth a lot.

So there's a lot of questions and possibilities there.

The spectre of the psychosomatic view of U.C., the difference between IBS and IBD, the idea that whether U.C. is psychosomatic or not there is still value and comfort in having a calm mind. On balance I think hypnotherapy is a great tool (both from my experience and current training), and possibly you could you could achieve similar levels of calm through other activities. Meditation, playing a musical instrument, going walking, dancing . . . etc

Just a small point though, if you do use hypnotherapy make sure your hypnotherapist chooses their metaphors carefully; my first encounter with this analogy was a bit disastrous; the last thing I wanted was flow!

I wanted a dam.

Things are progressing well, by the way, I have hypnotised quite a few different people now, using a number of different "inductions". We've even covered hand levitation. Looking forward to full body levitation shortly :)

Plumbing for beginners.

2010-10-28T10:58:00.000-07:00

They’ve made a real effort in here, none of those late 50’s early 60’s institutional colours, plastic seats, and the feeling of being a bad boy at school waiting for the cane.

Instead the ceiling arcs gracefully across a space that could be an airport or a university or a huge restaurant. There are TV’s displaying hospital information and BBC news, tropical trees in large pots, brushed steel handrails that I think have been nicked from Waterstone’s and Scandinavian style wooden floors. There’s even a string quartet playing live.

It’s a really good effort to make you feel less under threat. The receptionist was a bit of a Snow Queen; but to be fair she was efficient and she was doing her job. You can’t have everything can you.

I’m called through into a consulting room by the Stoma specialist – last seen when I had the operation to disembowel me.

But today I feel no fear, and I do not fear the future. I have been through enough to realise that I will survive and that life can be even better. So I feel absolutely OK.

Such a difference to this time a year ago when I was chronically ill and actually in danger of slipping off the disc of existence. I can’t believe how much I have changed. I am quite different.

She talks me through the reconstruction operation. You may know all this already but in case you don’t here’s the plan (There are some gory bits so look away if you don’t want to encounter that)

Imagine a hosepipe, and imagine taking half an arm’s length and bending it into a U shape. Now imagine slitting the pipe along the sides that touch. The edges could now be joined together to make something a bit like a long sporran. Now imagine all that again but this time it is my small gut.

They can do that and make a sporran or pouch out a part of my small gut. The bottom part of that is attached to your out-pipe. The top part is more complicated.

That part is not fully severed from the remainder of the small gut but kind of half sliced, and the pipe bent in two. Thus waste can escape out of the sliced section. This is turned into a new stoma with the route down and out temporarily unavailable.

Then it’s a matter of waiting for a few months for the down and out part to heal up while still being an “ostopath”.

Once it’s all healed up (and I’ve been to Glastonbury to feel the vibe) they do a few tests – nothing compared to the horrors of the past, and then, if all is OK, Its simply a matter of sewing up the half cut gut and . . .

. . . .You have full 100 mb / sec broadband connection.

So not this Christmas – next Christmas I could be on the road back home.

It’s a long journey that I never wanted to take, but along the way I have learned I can take any shit and still survive.

I remain.

How en trancing.

2010-10-10T01:39:00.000-07:00

look into my eyes

“Corpus insurance, Kelly speaking, how may I help you?

“Ah hello, I’m trying to get a quote for some public liability cover . . . I’m studying Hypnotherapy and we have to get public liability insurance . . .”

“Hypnotherapy . . . remind me what that is”

“Well. . . the client sits in a chair and I talk to them . . . relax them until they are very deeply . . . relaxed and then –um offer them therapeutic suggestions”

“They’re asleep”

“No, they’re in a trance”

“A trance.”

“Yes”

“Hang on I’m just going to run this one past my supervisor.”

“Ok”

The sound of music, up beat, a bit brassy. Time passes and I stare without focus at my computer and go into a bit of a dream. I’m brought suddenly out of my reverie by an abrupt end to the music and Kelly’s rather loud voice scything its way along the line. The words strung together with the rat-a-rat of a machine gun. Intoned like an incantation.

“OK just a few questions, but first I’m obliged to inform you that you must answer all questions truthfully and accurately to the best of your knowledge, some calls are recorded for training purposes, and in accepting this you agree to the receipt of occasional promotional material. Is that OK?”

“I just want a quote really”

“I know I have to ask you these questions to work out a quote for you”

“OK”

“Will you be using heat?”

“What? Er No”

“Working on a stage?”

“No it’s not like that”

“Using any medicinal substances?”

“No”

“Radioactive materials?”

“No – not at all”

“Strobe Lights?”

“No”

“Music at a high volume?”

“No – no music – its not like tat at all, they are sitting in a chair in my house or maybe their house, I just talk to them and . . .”

“They’re asleep right?”

“No they’re in a trance state. . . it’s . . .”

“What I’m going to do is take your number and get back to you on this one, what’s your landline number?”

Well, she said she would ring me back later that day. So far no call, but that’s all right because I found another company – Holistic Insurance.
No problem, completely understood. I’m now insured.

As part of the course I have to find practice subjects and work with them – fly solo as it were, and my first flight is tomorrow. I’ll tell you how it goes. . .

The world turns, and sun rises and falls again. . .

A friend of mine has volunteered to be a practice subject, and with characteristic punctuality he hammers my door quite forcefully and rings the door bell for good measure. I open the door and let him in.

Chit chat first it’s interesting to talk to him. Very. But perhaps I’m putting off the moment of my solo flight. So soon it's time to get on with it.

The weirdest bit is the transition from talking normally to starting the induction. It has to be a smooth cross fade. Not some ham fisted yank of the faders. I decide to go for the explicit but understated approach.

He closes his eyes and I hope his extremely busy mind relaxes. I think it does. I’m talking through a series of manoeuvres that I have remembered. Hoping I’m not missing something out.

Of course it’s a little odd at first, but soon it feels (for me at least) a good deal better. But I know I’m not giving as much space as I have done in practice sessions.

30 minutes later he emerges from the experience. He says he feels more relaxed. That’s good. He’s also been analysing and decoding what I have said - I expected no less from him. But that means that the conscious mind has been in play, and that of course blocks access to the unconscious mind. I am frustrated with myself for that. On the other hand it’s exactly what happened to me and I really wanted and needed some help. So maybe its OK.

Next time . . . I will get better at this.

Hypnotherapy

2010-10-01T10:27:00.000-07:00

A while ago I decided to train as a Hypnotherapist, as described in my previous post “Does this sound weird?

This was for two reasons:

1) It helped me deal with the sharp steel and porcelain of the medical establishment, offering a refuge, and a way to cultivate tools in my own mind to encounter the challenge.

2) I had a great desire to learn and practice something new and useful. I had been involved with film and video production for years, and I love that still. but I feel - as we surely all do - that there are many other areas and experiences to be had. In fact I have lived many of these already. But I was searching for something new.

So at last the time has come. Last Saturday I started on the journey. It’s a really fascinating experience both to be in a hypnotic trance and to put others into one. I think there is a great overlap here with meditation and some of the issues discussed in the blog “Mindfulness and Mortality” by Gloriamundi, which, as you can see from my blogroll (to the right of the screen), I’m following.

I had been put into a trance before, but not in a circumstance in which I analysed the trance itself. On the course we were all put into a trance using an induction that described a journey through a landscape. You may have experienced similar things in areas such as theatre training.

Anyway, afterwards we were asked how long this took, and my guess was four minutes (logically not really possible – but I think I was still slightly en-tranced) the truth was it was more than twenty minutes. I could hardly believe this.

It was also so odd to talk to someone, and watch them first of all relax, as you might expect, but then to start slumping slightly forwards and to one side, see their skin slacken, and the jaw become loose. Of course we are a self selecting group with good reasons to be compliant, but there was more going on than that.

Now I have to find about five people to do a relaxation induction with before the next session. At the moment that's all we are allowed to do. That is quite a daunting task when you think of it. I think it will be easier to work with people who are known to me, but not really close friends and family, as the fear is that they will just laugh at me because they know me too well. I think a certain distance would be helpful.

There were many other fascinating insights and experiences, and many more to come. I will keep you posted.

So that’s the way it is with me. Just wanted to keep you up to date.

Thanks as well to all the people who have donated so far to the Crohn’s & Colitis UK charity. (See the widget- top right)

I remain

How it is now

2010-09-03T00:09:00.000-07:00

How beautiful a thread this existence weaves,
Getting out of the car on Chestnut Grove.
I had imagined it to be high noon,
Stitching time into my hopeful step.

But on the pavement conkers and brown leaves
(I Love this walk, these shops, these dreams).
I whisper a broken tune,
Unconscious but a living thread.

It’s later than I thought, but
While I Breathe and smile this is my world.
Fate’s needle will have to wait;
My final twist is not yet curled

What’s it like to live with someone with U.C.?

2010-08-06T13:08:00.000-07:00

Love forté

So what’s it like to be the partner of someone with a chronic disease?

It occurred to me that this blog has described my own journey, but has not addressed the experience from another’s point of view. Especially someone who has walked beside me every step of the journey.

To stand in a strong wind you need balance not strength. In my life much (most) of my balance comes from Clare.

I’m sure that for many of us that live with a disease there is someone who shares that journey with us.

We’ve been away camping in Wales. Walking on the beach, cooking on the single burner, looking at the stars through crystal clear skies. Our boys now men.

It’s been a long time since I could enjoy camping out. We used to a lot, but the constant trips to the toilet block, and the stumbling through a tangle of sheeting and guy-ropes in the small hours had made it rather difficult. This is no longer an issue. So “woo hooo!” we’re camping.

One night outside our tent I recorded a conversation with Clare and we talked shit; Josh made some jokes and I faddled with my recording device. We take up the recording just as I have got it all sorted out:

Clare: . . . . .Have you ditched that? Because I think that laughter could be quite useful?

Me: Yes indeed. That’s true.

Clare: So you’ve just ditched that and you’re editing already.

Me: Alright. . . OK.

Clare: I think that’s bad actually. Because you’re editing as you go along.

Me: I am aren’t I?

Clare: Mmm, yeah there was a lot of laughter . . . The question was when did it all start. And God! – it’s been going on forever.

Me: Has it?

Clare: Well a very long time.

Me: ‘97.

Clare: Yeah a long time.

I don’t remember a beginning but it became very apparent after an amount of time – and I can’t remember how much time it was - that you were quite ill. And it kind of affected everyone else’s lives.

You were in denial and everyone else – by which I mean Me and Josh and Gabriel -were looking on and thinking “actually this is pretty crap”.

I don’t know how long it is . . . maybe - 10 years is too much . . . between 10 and 5 years, I don’t know how long . . . but it’s been difficult.

Me: Of course it’s been difficult . . . What would you say have been the most difficult aspects?

Clare: Well it’s only been really difficult when you try and step outside your normal everyday life and – I suppose have a holiday – like going camping or traveling to Italy or going to New York, or deciding to go on the London Eye. You know whenever we’ve decided to do something as a leisure activity it would just be really difficult because you couldn’t relax into the event.

But we’d just go along as normal and try and plan things, like days out and doing this and doing that, but whatever we had planned suddenly when we were on the day out it would be obvious that it couldn’t go on as normal because we either had to get there very fast or we had to stop and be thinking about where a bloody loo was. (Laughs) ha, yes so . . . days out were full of tension and spoilt. (Laughs) Everything revolved round shit and getting to the loo.

(Laughter from both)

Are you still recording now?

Me: Yes

Clare: Oh good - good. But it wasn’t something that could be complained about because of course you were ill and we just had to accommodate you know – The Illness. So privately in my head I was thinking “God this is really annoying”. You know “it’s not fair” . . . but I couldn’t really express that because you had to deal with your own emergency.

(I laugh)

So it was just like dealing with someone with a life in emergency.

Me: I used to hate it when we’d be driving along in the camper van and I was realising we had to stop, you know. It was very embarrassing.

Clare: Just get out and deal with it behind the van – the annoying thing was that you were embarrassed. That was actually annoying. Because we knew what the problem was and we just thought get on with it and have your difficult moment.

I was actually pissed off with your own - your hang ups about . . .

Me: . . .What crapping in public?

Clare: Yeah.

Me: Thanks. (Laughs) It’s a fair enough hang up to have isn’t it?

Clare: Well. . . yeah but. . .having established that that was the big problem I suppose you got a double whammy. Not only were you shitting your pants but also it was an embarrassing thing to do.

(Both laugh)

Me: Yeah?

Clare: Yes (laughing) but it was quite a burden for everyone else to deal with. Yes it’s embarrassing because someone in your family is about to shit themselves, but also they have got a huge hang up about the fact they are going to shit themselves.

(Explosive laughter)

Me: I think you might find that I was with most of the population here . . .

Clare: I think you had a huge problem with anything lavatorial. I do think it was a double hang up. I mean you only have to look at your grandmother to see that there’s always been a big issue with the lavatorial. So I was dealing with a double hang up.

Me: So; are you saying then that you subscribe to the psychosomatic view of the ulcerative colitis?

Clare: Oh No! Not at all. No. No No No. I’m not denying the condition you found yourself in. And of course it was very embarrassing and very difficult to deal with. No I wasn’t straying on to that at all.

Me: No?

Clare: No; what I’m saying is that you found yourself with this very difficult condition to do with your bowels BUT layered on top of that was your own family’s difficulty with shit and bowels and . . . I think you had layer upon layer of difficulty.

Me: A kind of a layer cake . . .

Clare: Yes. You had difficult periods and periods of remission I suppose. It wasn’t dealt with for a very long time. You avoided going to doctors

Me: Well I don’t think I did avoid them, I have to object, I don’t think I did avoid going to the doctor.

Clare: Well . . .

Me: I didn’t avoid doctors at all.

Clare: Well there was a period where you were obviously very ill and nothing was being done about it. And I know there was a time when I spoke with Josh and Gabriel and their opinion was “Why the bloody hell doesn’t he just go ahead with the surgery that’s been recommended?” Because it’s really difficult for everybody.

Difficult for you; but also difficult for the rest of us. I just think we got to a point where we were then dealing with another layer in the whole thing which was your huge fear of surgery; which was completely understandable . . . we could understand that, but you had this huge block.

Everybody: i.e. me, the surgeon, Josh and Gabriel, could see that there was something very obvious that needed to be done to help you but were resisting it. We just all thought why don’t you just go ahead with it – but it wasn’t for us to say.

In addition to the problem of illness, and the problem with your own sort of family hang ups with shit and stuff, there was another layer which was “being told what to do” and going ahead and agreeing to surgery. So it was just layer upon layer of hang ups really.

Me: I feel when I look back on it that what was normal had shifted – we couldn’t go camping, we couldn’t do this and we couldn’t do that.

Clare: Yeah. I think it had. Just lots of things we wouldn’t consider doing. I think sometimes I pushed and hoped that we could do those things and we did because I pushed.

We just didn’t do much. I mean I think the last straw was the Italian holiday where we thought were going to have a nice holiday in Italy, and in fact Josh and Gabriel and I did have a nice holiday. But you were completely lame – you couldn’t walk, you couldn’t go anywhere, you completely missed out. I‘m sure you did your own stuff but . . . but really it was like three of us doing one holiday and you doing your own thing.

Me: Hmm. True yeah. I had a very different experience of . . . (laughs)

Clare: I remember deciding to go on the London Eye and we couldn’t bloody walk there fast enough because we had to get there by a particular time. And the whole walk from St Pancras to the London Eye was affected by whether you could get to a loo.

The whole thing was suddenly this sort of really stressful route march. Then I ended up sort of feeling guilty because I’d planned it, and organised it, and we needed to be there by a certain time. I just thought I wish I hadn’t bothered and I didn’t plan anything like that again.

Me: Hmm. Sorry.

Clare: I suppose I can say it now because we’re on the other side; but beforehand I didn’t like to say anything like this because it just seemed really selfish. To complain that you couldn’t plan a particular day out or a particular holiday because you were in a far worse condition, and that was the thing that really sort of ruled what went on.

So I didn’t feel in a position to say “This is bloody annoying” Because my discomfort or irritation at something not happening was fairly small compared to the reality that you were physically incapable of doing the things that we wanted to do together.

Me: I can’t believe the place that we got to, to be honest.

Clare: I felt I put myself completely in the back seat. I knew that you were really concerned about yourself but in way I could not worry about that because you were there dealing with the pretty frightening prospect of having surgery and having really drastic emergency experiences.

I thought there’s no point in me worrying about that because I’m sure you’re doing lots of worrying about that yourself. So the role I felt I was playing was I was actually – I think I was really concerned about what Josh and Gabriel were thinking. Because it could have been – it was pretty momentous for them, and you were very ill and of course you know – you could have died .

So I felt a bit straddled between worrying about them and there was that sort of worry about you.

For myself? . . . don’t know I just . . . I would have dealt with what ever happened. Because whatever happened . . . I mean you know if you died you would have died, you know. . . and I wouldn’t worry about you then because you’d be dead and you wouldn’t be worrying. I mean I knew in theory you’d be pissed off about that but you’d be dead so it wouldn’t matter.

Me: (Laughs) You can’t fault that logic.

Clare: I blotted myself out and if you died . . . . pfff . . I sort of you know – in a rather brutal way I didn’t care because I’d then – I suppose I would then come back into the equation and I would have worried about me.

I think in that sort of situation you have to have to sort of cut to the chase. I think I’ve done a lot of that for the last few years. Just not worried about what I think you know. The fall out might be about to hit us. I don’t know. Cos I think there’s a lot of shit going on you know. I’ve spent quite a lot of time over the last few years not thinking about myself. Putting myself away.

Me: I think nobody can possibly doubt that.

Clare: So it might be . . . so there might be. . . I sometimes wonder if there might be . . . you know actually I’m fed up of feeling like this.

Me: Well that would be quite understandable. How would you advise somebody else if they found themselves in your situation? Is there anything you can say to somebody in that situation?

Clare: I don’t think I would say anything, I couldn’t at this point. In an interview like this . . .if somebody was in the same situation and they wanted to talk to me then I could have a conversation. But I would have to be responding to what somebody else was saying. I wouldn’t give advice or say anything. I wouldn’t say anything into the blank out-there-ness.”

Posted with love.

Does this sound weird?

2010-07-26T05:45:00.000-07:00

A different view.
(Pinhole photo of New York - 2007)

I have a feeling this may sound a little cranky, I hope not, but I am aware that it might.

Readers of this blog may have noticed that I have mentioned Hypnotherapy a few times, and I have said how I found it very useful in dealing with anxiety, stress and fear.

I thought I might try and make a difference in other people's lives rather than just describing my own journey.

OK - so here's the odd bit:

I have enrolled on a course to become a qualified Hypnotherapist. The course will start in September.

Can you see me in that role? Time will tell.

I've also done another thing which is to set up a "Just Giving" page which you can access by clicking at the link above and to the right. Any money given will go straight into the coffers of Chron's And Colitis UK. A charity to help people with Chron's and Colitis.

It would be great if you could have a look.

Right - I won't mention it again

I remain

I tell the tale

2010-07-01T08:57:00.001-07:00

Much better now I must say.

At first I thought I was going to die,
As my blood ran down the Loo;
Asking the obvious question “Why
Am I crapping blood not poo?”

I thought I’d have to say goodbye
To my family and my chums.
To perish, how undignified,
At the mercy of my bum

There must be something of this pain
Written in some book,
So in the library I tried to name
This method of the reaper’s hook.

The doctor prescribed some pretty pills
With names that I could not pronounce.
I’m afraid they did not cure my ills,
Stem the flow, or stop the spills.

So soon it sadly came to pass
That I had a great indignity.
They put a camera up my arse;
The dreadful colonoscopy

Maybe acupuncture
Could give me some relief?
Use the force of pins, and chi
To minimise my grief.

Nothing seemed to do the trick,
From enemas to rabbits ears.
I went from ill to really sick
Over thirteen really sticky years.

I knew the precise location
Of every toilet in my town,
But often in some unknown station
I became the crying clown

Strange how this thing can change your life,
Raising stress, and causing strife;
Make you wary of adventure
(And travel such a risky venture)

Six hours of Infliximab on a drip,
Would cure my strangely painful knees,
But never seemed to have the kick,
To cast out this crap disease.

“In my end is my beginning” says the poet;
And it turned out so to be.
I was eventually disemboweled.
(They prefer the word "Colectomy")

I'm getting a bit puffed out with the fine detail in this rather crass ode, but I shall return and pick away at it as inspiration suggests and time allows.

I have to go to sleep now.

Back to the start

2010-06-03T02:43:00.000-07:00

Bangkok 1988

Where does an illness start? In your genes? In your own lifetime? In your experiences? In your environment? It’s hard to know sometimes.

It’s 2010, Nottingham. I’m 53, white middle class, and mediocre.

I’m getting out of my car, making sure I have my pad of paper and a pen . . . glasses as well – yes I’ve got them - that’s good. I’m at my doctor’s. I’ve come to read my medical notes.

I am met by a wise looking woman who is very polite and professional. She is the practice manager. She asks me to sign in, and reminds me that my squiggle on the paper binds me to discretion; that I will not reveal names, places, and details of anything I may see or hear. So in what follows I haven’t.

I Squiggle; I accept.

She shows me to a computer and runs swiftly through the MS-DOS style screen that contains my notes. It seems that the electronic notes only go back to 2000. I’m looking for something way back in 1988.

With remarkable speed she presents me with a tattered and browning wedge of notes that go right back into my childhood. Medical records in thick brown manila, fading fountain pen script, letters written on manual typewriters, actual documents that go back as far as the 1960’s.

There’s a typewritten letter from a child psychologist that documents my meeting with her, the paper old like a leaf, but the typewriter impression still fresh. This hasn’t seen much light since 1965; The red letterhead at the top still sharp.

I shouldn’t really dwell too much on this letter, as it’s not what I’ve come to find out about. However it describes me as a fair-haired child, reasonable verbal intelligence, problems with writing, and as a consequence having “behavioural problems” due my frustrations at school. Dyslexic.

Aha! What’s this? I find a card that records a visit to my doctor. At the time I am 36. Many years ago, before I had guts ache.

I’m back in 1988, a small town in the East of England. A sunny spring morning. The Stranglers “All Day And All Of The Night” can be heard leaking from a tinny radio. Across the wooded park I can see the doctor’s. Never been there before. Bit nervous.

I always felt guilty visiting doctors. Never wanted to waste their time on my irrelevant problems. I’ve been brought up not to waste a doctor’s time unless it’s a last resort because there are many people with real problems.

It’s a Victorian red brick house, with a bit of a fake Doric column around the door. Inside a waiting room with a lino floor that had that smell and the usual selection of out of date magazines; dog-eared by a thousand fearful fingers and thumbs.

A cordoned off play area contained a garishly coloured collection of plastic toys. (Nowadays it would be some kind of infection risk I’m sure)

It was my turn and I entered the unknown; the doctor’s room. I had not been to a doctor for donkey’s years. He sat behind his desk and blinked at me from behind his glasses. White hair, a slightly red face. When he spoke he had a charming southern Irish accent.

“So what seems to be the Trouble?”

I started to explain, rather hesitantly, something that I could not really describe very well.

“I’ve got this feeling . . . it’s like a very mild stitch almost, but not even that bad. . . It’s just an odd feeling . . . doesn’t hurt at all. I just haven’t had it before.”

“And where are you feeling that?”

“Here” I pointed to the left of my navel, on the side. The soft bit.

“And you’ve not had this before?”

“No”

“Eating alright? Not doing anything new and strenuous? No reason you can think of?”

“No”

“And are you going to the toilet often?”

“No . . . not really just the usual you know”

Why do doctors always want to ask you about your backside or your genitals – never about your fingers or your feet or your face?

“Work?”

“Yes, I work in an Arts Centre, film and video stuff . . . some teaching . . .”

“And do you get worried much - stressed?”

“No – not really”

He pushed the glasses up his forehead, rubbed his eyes. Then took his hands away so the glasses dropped back into position. He blinked at me again.

“You know what I think?”

“No – I don’t know what you think.”

“I think you might be stressed, this might be stress related: psychosomatic.”

“Oh – right. . . It’s just that I haven’t had this sensation before. . .”

“Now. . . What I’m going to do is suggest that if it doesn’t go away in a couple of weeks that you come back and see me. But like I say – I’m pretty certain it’s psychosomatic.”

“OK – I will”

And I left feeling a better.

But it didn’t go away, so I went back a couple of weeks later. This time he said he would refer me to a gut specialist. I pointed out that I was going on a long trip in a few weeks time and he took the dates I would be away.

“And where will you be going?”

“Thailand, Hong Kong, China, Coming back through Russia; Trans-Siberian”

“Well that sounds great. You enjoy it – Now you’ll get a letter inviting you for an appointment. I’ll tell them when you are away. OK?”

“OK”

“And in the meantime if you feel it deteriorating or anything go to your chemist and get some “Fybogel”. It’s going to pad out your gut a bit and it may have a small laxative effect.”

“OK . . .”

And I left feeling a bit better.

We went on the trip. The first time Clare or I had ever been in a aeroplane, went on a trek in Thailand, got married in Hong Kong, went by train to Beijing, crossed Mongolia, hooked up with the Trans-Siberian, flew home from Moscow.

We had a great wedding party when we got home. It was great to have done the journey, and it was great to be back.

There were two letters waiting for me. One inviting for an appointment, and one expressing disappointment that I hadn’t turned up. Another date was offered but I was unable to go to that as I had work in Newcastle. The record shows that I phoned to say so. Soon I received a letter telling me I would not be offered any more appointments as I had wasted the consultants time and that it wasn’t fair to other patients.

Today, 22 years later I read the letter that the consultant wrote to my doctor. He was apoplectic with rage, and it really comes across in his writing. Really angry that I had not turned up.

I am sorry to read the letter.

“This man” He wrote “ seems to think the service is designed for his convenience . . .”

I am feeling so bad reading this letter.

“I think if I was to meet this man I would not be able to view the case objectively” he wrote.

How annoying to realise that even at this very early date I was in conflict with a consultant. It was the last thing I wanted. I thought I was trying to keep them informed, trying to communicate.

I am very presently aware of his anger – I have wasted his time, and deprived other patients of his attention. I’m really sorry and shockingly surprised.

Dear Doctor Goodman (fake name), if you ever read this I apologise. I certainly never meant to anger you or waste your time.

However perhaps you too had some fault. Maybe a little arrogant; in reading your letter the words you use assume that I will do as you say. That I am an underling. You consider yourself above me, and you were not, nor I above you.

Back to 1988: the odd feeling? It had gone away. Nothing to worry about at all. It was Psychosomatic after all.

On the TV “500 Miles” by The Proclaimers, looking like two psychotic Joe 90’s. I bought the CD.

I don’t know if this was the first whisper of U.C. but many years later when it was clear and present it was in the exact same spot.

F.Q.A. No. 1

2010-05-08T02:42:00.000-07:00

Just asking

Frequently Questioned Answers

I have been thinking back on the thirteen year journey from discovering I had UC through the flare ups, under the knife, and out the other side with a stoma.

Anyone on such a journey will, on occasion, come across certain firmly put forward "answers" or assertions that will cause you to think "And yet I wonder?". These answers can be gathered into subject areas, and often start with phrases like "You should . . . " or "Yes but . . . ."

In this, the first of occasional posts, I question a random selection of "answers" that have been presented to me.

1) Answer: U.C. is psychosomatic.

Questions:

If it is psychosomatic, why can’t U.C. be cured using techniques such as CBT, Psychiatry, Counseling?

If it is psychosomatic, is it always a certain personality type that gets U.C.?

If it psychosomatic, where does this put theories that U.C. may have a genetic component?

Personally I had the psychosomatic theory served at me several times by professionals, and other very clever people. I did, and do, often question whether there is a connection between the mind and one’s health.

In fact I am fairly certain there is a link between physical well being and the mind, but I can’t believe that it U.C. is entirely a work of the mind. It seems to me that I had a genetic pre-disposition to U.C. My Grandfather had terrible guts, as does my mother and my Dad also suffered gut-trouble towards the end of his life.

I don't think U.C. is a psychosomatic disease, I think it is very physical illness whose origin and mechanism is not understood. In my experience the psychosomatic card is often played by people who are running some other agenda behind the scenes.

I must, again, say how I found hypnotherapy helpful as a coping strategy for anxiety.

It can’t be bad to try and get your mind straight, and decode yourself. Even if it won’t cure you, it will be work worth doing.

I think it best to try not to be a prisoner of your mind if you can help it.

2) Answer: Ulcerative Colitis can be cured with a change of diet

Questions:

If U.C. can be cured by a diet why don’t the N.H.S. simply tell you what to eat and save all the money they spend on doctors, colonoscopies, infliximab, stoma nurses, surgeons, hospital beds, and consultants?

I am no mathematician or economist, but surely printing a few menus and even sending someone round with suitable food would be cheaper?

Personally I agree that 15 pints of lager and a blazing hot Phal curry, topped off with a kebab between the restaurant and the front door is going to be quite disastrous for you, the U.C. sufferer. Equally a diet of mild broths, and insipid meals made from inoffensive ingredients will not give you so much of a gripe.

3) Answer: Alternative medicine can cure U.C.

If alternative medicine can cure U.C., why don’t we set up a system in which patients are routinely referred to alternative therapists?

Is there a conflict between conventional and alternative medicines over the treatment of U.C.?

For myself, I tried acupuncture when I was first diagnosed with U.C. and my experience was that it calmed some of the symptoms but it didn’t cure the disease. I really wanted it to work.

The experience of alternative therapy seems to me to have a shamanistic aspect to it as well as any other therapeutic effect. My acupuncturist took time to talk to me, did not frighten me, and only stuck very small pins in me.

I think there may be a great mutual misunderstanding of the two tribes; scientific medicine and “humanistic” (for want of a better description) medicine.

4) Answer: Surgery will “give you your life back”

Questions:

If surgery can give you life back, can I please take off this bag and pose in the nude on the fourth plinth?

What do you mean by “give you your life back?”

Before surgery I thought it was the worst thing that could happen to me. I viewed it as the ultimate submission and failure of the medical process and my personal resolve. I could not easily bear to contemplate being so weird and disfigured.

I was, in a way, corralled into the decision because I did not want to stroke the cat of death again.

Now, on the other side of surgery, I feel that I am still me and I am not as hideous as I thought I would be. I don’t have a rack of pills by the bed, and I can walk and go to the gym and swim. I don’t have emergency bog moments, although I am aware of my plumbing. This may mean that I have my life back, or not.

It depends on your criteria.

If you have any Frequently Questioned Answers I would love to hear about them.

A New View

2010-04-11T01:47:00.000-07:00

The hospital corridor is filled with trolleys containing files, Mr Fitch is extracting one of these files and talking to a nurse. In the distance my original consultant also extracts information from a similar trolley.

Earlier this year, in a similar situation, my heart rate would have escalated, and adrenaline would have coursed through my veins; but not today. Today I feel quite relaxed and at ease.

A nurse calls my name and Clare and I are ushered into a white room, sporting a computer, a chair, a bed covered in paper, and what looks like a vacuum cleaner for the body. However none of these things strike fear into me. Not even the title of the room “demonstration” in a discreet sign attached to the door fills me with trepidation.

My old consultant enters, clutching a large file. I immediately stretch out my hand and she takes it. I have had a strange, sometimes difficult relationship with this woman. She has wanted me to be disembowelled for a long time, and this has always been a matter of contention. Now it is done and we seem to be on a more level relationship. I am genuinely pleased to see her, and she is genuinely pleased that I am healthy. Brief conversation and then she leaves. “Back to the grindstone” as she puts it.

Next Mr Fitch enters with my notes. A large file held shut by a long brown rubber band. He removes the band and starts to twirl and twist it around his extremely clean hands.

After preliminary conversation, about whether I am getting on OK we move on to discussion of the future and possible surgery. Reconnection is the word they use.

“I think I want the full broadband 100 megabytes” I explain. The rubber band twists around his fingers tighter and tighter.

“I presume if it all goes wrong the worst thing that could happen is that I end up back where I am now?” I ask.

“No; the worst thing that could happen is that I could kill you” he says quite calmly. He assures me this extremely unlikely.

Later on we even have a joke and a laugh as he describes being in hospital himself one Christmas and being brought NHS sherry. NHS Sherry?.

"It was horrible and brown" He laughs loudly. I actually quite like this bloke.

I am not worried about the future whatever it may bring.

I must have travelled quite a long way in the last year. This would have freaked me out a few months ago.

Block Party and Swim

2010-04-01T06:40:00.000-07:00

At my Gutless Rog party dressed as Dr Love, Talking to Dr M.
(We know how to party!)
(Photo by Frances Lee)
(Apologies for mis-nomer)

Sartorial elegance itself

I decided to have a “Gutless Rog” party to celebrate the end of 13 years with UC, and the coming of spring. I used to have lots of parties but not for a long time now.

The day of the party saw me preparing a number party plates; and baking potatoes. This smorgasbord of culinary delight included coleslaw, and Russian carrot salad. The evening arrived, and brought with it lots of old friends from different quarters of my life, and a jolly good night it was too. However parties are not the point of this blog. Lets stick with the nitty-grrrrritty.

The day after the party came and there was quite a lot of salad left over. Reasoning to myself that in the last year or two I had avoided salads and seeds on account of the old gut, and given that I no longer have the offending item, it seemed the sensible and healthy option to pile into the salad. Reasonable surely?

Surely not. Pain. With every wave of peristalsis considerable pain, and no word from Banquo. Not even a mutter. It was really horrible. Clare whipped around the internet reading up on the condition and promptly pronounced me blocked. The worry being that everything could gum and you can end up being nauseas and worse.

I rang the Stoma nurse, and she told me that it would probably unblock in a day or so. Clare prescribed hot water and rest. Which is what I took. On the Wednesday I was teaching and found it quite hard to keep going and I had to keep sitting down.

Anyway, eventually it unblocked thank god. So there was a lesson for me.

Followers of this blog may also be aware of my attempts to get back into swimming and exercise, and the sartorial problems of having a scar that stretches from my ribs to my whatsit, a hole in the side, and a bag.

The answer is a triathlon suit. I got mine from from Swimwear On Line, but I didn’t buy it online as I wanted to look at it and feel how stretchy it was. I phoned them up and spoke to a very helpful man. It would be fine for me to come the factory and look at the garments, and buy one there and then. I mounted my motorbike and set off for Sutton In Ashfield.

As an aside I have to mention that I passed something I had never been aware of before. The Sherwood Observatory.

In the factory I discovered the man, surrounded by piles of swimwear, a line of women operating sewing machines, and the occasional computer. He eyed my up and down and pronounced me 6 foot and about a 33 inch waist. I felt slightly trapped under his microscope for a moment. However I left with a garment stowed in my rucksack.

A few days later I joined a new gym. I felt that the old one was falling apart at the seams, and also that I would rather go somewhere people didn’t know me at all. A man without a past seemed more to my liking.

So it was that I entered the new gym, triathlon suit in my bag, and some excitement in my heart. I was amazed to be given a towel free of charge (this never happened in the old place – 50p they used to charge). The changing room sported an iron, hair dryers and a centrifugal spinner to dry your swimwear! The place had a range of machines that all worked, the pool was small but nice, and there was also a sauna and steam room.

So here are the results of the gym experience:

I was able to use all the machines without anything coming unstuck. The swimwear was perfect – both covering everything up and maintaining a good profile through the water. I’m delighted too, to report that the heat of the steam and the sauna also did nothing to loosen or dislodge any of my “apparatus”.

So, gentle reader, all is good in the world.

“Image de corps”

2010-03-15T22:51:00.000-07:00

A short film by N Ozzer-Poison

(With subtitles)

Interior. Night. A bedroom somewhere in the attic of a dreaming head.

Dimmed lighting, and the mournful rasp of a horn drifts low from the ancient hi-fi, muted and sinuous on a bed of lilting piano and bass. The camera tracks slowly across the bedroom, over a discarded uniform cast over the back of a chair, coming to rest on some riding boots and sword; silently standing guard.

ARKAYEFF lies, hands behind his head, his attention is focused on the fan that turns relentlessly on the ceiling. He is inscrutable.

The camera is now on the ceiling looking down, through the fan blades.

ARKAYEFF (voice over):
“Basford sanglant”
“Bloody Basford”

PROTO NYMPH enters the room all lacy and see-through, slips under the cover like a velvet cat. ARKAYEFF turns to look at her, silent for a while then:

ARKAYEFF:

Est-il possible que nous soyons dans l'amour ?”
“Is it possible we are in love ?"

PROTO NYMPH looks at ARKAYEFF with knowing eyes; blue gleaming jewels. Unreadable.

PROTO NYMPH:

“Tous les hommes ont deux choses : Un bâton et un sac”
“All ze men‘ave two fings: A stick and a bag”

ARKAYEFF says nothing but rises from the bed, and in the dull glow of the light from the alarm clock and the radio. ARKAYEFF starts to peel off his shirt and . . .

N OZZER POISON
“Coupe ! C'est désespéré"
"Cut! zis is 'opless"

N Ozzer-Poison is not happy, incandescent with rage he walks out of the room throwing the script on the floor.

Fin

Do I have a disability?

2010-02-26T08:14:00.000-08:00

In order to improve the running experience I have invested in a kind of cummerbund which holds me tightly round the middle and stops me feeling as if I am about to open up like a book.

One day I walked at speed to the forest recreation ground (mile and a half) which warmed me up, and then started to do the run / walk routine. Plodding so slowly and oafishly round the field whilst others seemed to spring painlessly past, carefree of their natural energy. Bastards!

I discovered that on the forest there is an outdoor gym which uses your own weight rather than weights. I sweated round all the bits of equipment and it felt really good. I felt almost euphoric as I pumped and pushed. I was me again.

I had also decided was that I was going to swim again, and so Clare and I arranged a visit to a company called Ostomart to look at some high waisted-swimmers. I was not really sure about these as have been used to budgie smugglers all my life. The thought of wearing such a voluminous garment in the water gave me black and white and grainy images from the mid 1950’s, and did not appeal.

We found ourselves in an office staffed by about 5 women behind computers, and on phones. They showed me a pair of the sail like swimmers; and these were the small ones. My god! You could catch fish with these things. I decided against them. I asked about changing my prescription to be with them and before we knew it we were in a room stacked to the ceiling with “products” and “supplies” The woman showing us round this odd new world seemed to know everything. She was easy to talk to, very re-assuring.

“People get used to a product and don’t like to change, so we have to stock old designs as well as modern ones.”

She described how some people have a rubber bag which they keep on for a really long time and which they wash out. Not what I want.

The sartorial problems of swimming seemed to half solved when I bought a pair of Bermuda shorts. These in combination with a pair of high-waisted elasticised pantaloons from Ostomart, seemed to offer the possibility of swimming again.

So yesterday I walked to the Noel Street Baths, and asked for a ticket to swim. The woman asked if had a city card. No I said, so she gave me a form to fill in.

I admit that forms can defeat me quite often but this one looked a doddle; name, address etc. But then I got to the question

“Do you have a disability?”

I was stumped and I didn’t know what to put. Does anyone out there know the answer to this question?

Having got my ticket I entered the pool area. It’s one of those really old pools that have changing cubicles all round the sides, and vitreous tiles .

I slipped into my new pantaloon / swimmer combo and opened up my new goggles. I was ready to swim. In the pool I started swimming with great pleasure. It was wonderful. I used to swim everyday. I really miss that, and the sauna too. As I got to other end I did a quick grope to make sure everything was still in place. The Bermuda shorts had slipped down to my hips, and my bag was poking out of the top like a large dog’s tongue.

I leaned against the wall and flipped up the goggles on my forehead and started to adjust everything. It was at this point that one of the goggle eyepieces slipped back down over one eye.

I had suddenly become a strange squinting man fumbling with his nethers in the shallow end. Not so cool. Shorts tightened to the max, I set off again, but at the other end I was one eyed and fumbling again.

I returned to the changing cubicle and bodged two holes in the waist band of the swimmers with my car key. These allowed my to rethread the boot lace at the front in such a way that I could really tighten them up. I emerged from the cubicle like a man wearing a whalebone corset.

BUT

In the pool I was swimming again. Brilliant.

And I’m so much better at swimming than running.

I’m happy

Learning to run again

2010-02-07T10:09:00.000-08:00

Rome 2007, a limping Roger sweats his way around the Coliseum accompanied by The Marchioness of Basford and Sherwood.

It is now about 5 or 6 weeks since a masked man in green pyjamas cut me in half. I am feeling a lot more like the old me now. I have more energy and I have got used to the new plumbing.

One of the strange side effects of having colitis has been that my leg joints have been really painful at times. Sometimes it meant that I lurched slightly in the street, and being quite large and bewhiskered, people would cross the road in case I asked them for money.

At times I've had to use a walking stick, and I have been rendered virtually immobile. Some UC patients will have experience of Infliximab which I was on before the surgery. Apart from playing around with my immune system it also gave me a few weeks pain free walking before I would slowly seize up again.

I used to run a lot, many years ago now I admit. I used to casually run 10 miles without a thought. Then I got the Ulcerative Colitis and running didn't seem like such a good idea. It shook my guts, and as time progressed hurt my ankles and knees. So then I used to go to a gym and grunt on the machines there before swimming a lot of lengths - (100).

I was going to the gym right up to the day before I went into hospital to meet the masked man. Now, after the operation, my legs don't hurt me anymore. I can walk with ease.

One cold night last week I was coming back from a pub, and I took it into my head to combat the cold by running. So I started to run and despite still looking a little frightening to other pedestrians (not wearing running gear you see) it was not too painful.

So a few days later I set off to run round a large park area of Nottingham called The Forest. It was cold morning and my eyes and nose and ears were cold.

I started to run very slowly the length of The Forest. It was a bit odd, I seemed to have leaden legs and I ran out of breath pretty quickly. All around me were athletic people gliding by at speed almost as if riding bicycles whilst I trailed along at petty pace gasping for breath. Some of them slips of girls that ran like whippets, some of them big muscular men in football gear nonchalantly trotting past me like horses.

Today I had another go. This time I had planned to walk for a bit, run for a bit, walk for a bit, run etc. I started by going for a walk up a hilly road to warm and loosen the legs, then on the flat I began an inelegant run. I managed to keep it up for about three minutes (That really is bad) then I walked for about the same amount of time. I repeated the walk run routine for about 30 minutes.

My knees and ankles have become very weak, and going down hill I fear that my knees will give way.

IT DOESN'T MATTER! I'm running. Just a little bit, just a step at a time.

I will run again.

One month on

2010-01-23T22:11:00.000-08:00

Clare and I on the Island of Islay several years ago
(I found a load of unprocessed films and this was one of the frames)

It’s a month now since the operation.

Physically I am pretty strong again, and I can do all the things I need to do. Walking into town is no problem, I can drive a car, I can eat what I like. Banquo is fairly well behaved and tends to venture into soliloquy mostly in the mornings, when he can be pretty loud. But after initial griping he calms down and is quiet for the rest of the day usually. I have had a few moments of worry, for example in the cinema when, in a quiet and tense moment in the film, I have feared Banquo was going to upstage the proceedings, but so far he hasn’t.

To give a quick, sanitised, wholesome run down of the waste collection and disposal system: There is a base plate made of thick plastic and rubber, with a hole in the middle. Its about the size of CD and flexible. The back of it is sticky with some extraordinary adhesive. Banquo sticks out through the hole, which I have to cut to the right size. Added to this, there is a bag which, about the size of a pitta-bread, sticks to the base plate. This bag is actually quite a wonder of invention. It is completely water proof and is made of a kind of thin papery material. It is also totally hermetically sealed so not a whiff escapes. The bottom of the bag is sealed in the three folds, and Velcro. This can be opened to drain the bag.

It isn’t pleasant, but the trick is to have everything you need ready, turn on the radio and just do it without thinking about what you are doing. Just listen to the radio, wash your hands and re-emerge into the world. After all isn’t this what you bum-wipers do really?

I have found that I have to learn to sleep in a different position. My preferred position- a kind of recovery position - being uncomfortable now. I slept like this one night and I think my body weight and the shape of my belly must have caused a bit of a leak which was really annoying. After speaking to the Stoma Nurse (who is brilliant) I was issued with a very attractive elastic belt which holds the whole thing in position more firmly. I have also discovered that attaching the base plate whilst standing up rather than sitting ensures a better seal.

Sometimes you feel a bit like a plate spinner who hasn’t got quite enough hands to keep everything going, but its OK I have learned it now.

Psychologically it has been OK, and I have not really lamented. I have wished to go for a swim and a sauna very much and I am working on the sartorial problems involved. I’m thinking of something like a triathlon suit which stretches from the thigh to the neck. I’ll solve it soon. I miss exercise and swimming and sweating a lot. I miss the chatter and gossip too.

I was asked the other day if, knowing how it is now, whether I would have had it done sooner? The answer is I’m not sure. Many people report an almost euphoric feeling and use phrases like “I’ve got my life back” I have not really felt quite like that. It is great to not have to constantly monitor my proximity to the nearest loo. It is great not to have to constantly carry what I used to call my “shit kit”. It feels a bit weird sometimes, and I suppose I do vainly wish I could disport myself in a pair of budgie-smugglers.

My scar is nearly healed. When I went to have my stitches out (actually staples like you find in stationers) I had every other one out the first day. Did they think I was going to open up like a book?

When I went to have the remainder taken out I felt a sense of freedom. Sadly when I inspected myself at home I found that she had missed FOUR! I had to return to have them hoiked out as well.

I have also discovered a well written, witty, and truthful blog by a man called Martin who has passed this way before. I recommend it to you. You can find it at

http://numbertwos.blogspot.com/

OK. Got to go back to sleep now; it’s 6 in the morning and I’m running a workshop later.

Where do I go from here?

2009-12-30T08:50:00.000-08:00

My lawn, my maze.

I think it’s time to look back and reflect a bit on this experience. Now that I have got to what must be a stop or two above base camp.

I have been trying to remember how and why I made the decision to have this surgery. First and foremost there were considerable medical grounds for it. I can no longer have Ulcerative Colitis; I may have a few new things to think about, but that has gone forever. Also I was in a high risk group of developing bowel cancer, and that too, can never happen now. So there are two excellent reasons for the decision.

There are others as well though, the most obvious of which was that 2009 saw me at death’s door twice, and that can’t be good for you. I could still stand there again for some reason or another, but the most obvious potential causes have gone.

And for the foreseeable future at least, I won’t be constantly mapping my proximity to the nearest loo, no longer worried about getting a 40 second warning in the middle of lecture, or whilst operating a camera in some loo-less environment.

There is another set of reasons, and please don’t take this the wrong way, but getting shot of the medical establishment is a plus too. No more colonoscopies, no more 4 or 5 hour infusions of Infliximab, no more weird cold stunted conversations with doctors. I am through with that. There may be more to come, but in a sense I have moved forwards and away from their grasp in the long view. Was it Winston Churchill that said “If you are going through hell keep going”? Yes it was. I just looked it up.

Looking back on the experience to date, anxiety and fear have been my biggest enemies. Worse really than the hospital experience, and very undermining to a positive engagement with the actual moment of incision. Here I want to say that, for me, Hypnotherapy has been very useful, interesting, and powerful. True I was still scared as hell as I lay on the anaesthetist’s gurney, but I did at least have one or two strategies left in my nakedness.

There were also times when, on the run up to the operation, I was feeling physically and emotionaly happy, and I had to remember to notice and keep them. It might be happening tomorrow, but they weren’t getting me today. Just one day at a time.

I also tried hard to project myself forwards in time and remind myself that it would be different, that there would be another day. I am happy to say there is.

My own network of friends; people I love, people who love me helped hugely. It was good to take comfort from the support and warmth of these people. I love you all.

As for the future; who knows what it will bring. At the moment I am trying not to focus too clearly on the mechanics and plumbing of my new life, I am just doing it. I have enjoyed setting and achieving one tiny small goal – walking into town. This is like a little plant that will grow into my new gym, I intend to walk frequently into town, have a cup of tea and walk back. When that is easy I will do a different walk. Who knows I may even manage to run again one day.

In the future there is also the question of “reversal” in which I end up with a pouch inside me made from me. This would involve perhaps two more operations, and may mean that I am back to running to the loo. On the other hand it might not.

Who knows? Maybe I will end up fitter than anyone thought I would be. For the moment I shall aim for that.

Moving on

2009-12-29T11:42:00.000-08:00

A photo taken during one of my more formal lectures.
(thanks to student camera)

Today Gabriel (youngest son) became a man. 18 years old, out there and up for everything. The day starts out in our bedroom with the whole family watching Gabriel unwrap his presents.

Since I am unable to bend in half normally, one of his first chores as a man is to tie my shoe laces. I think there’s a certain beautiful poetry to that. Wow! he’s done them pretty tight!

Banquo starts working, by making all sorts of gurgling noises. Still no real substance to his spectral interjections though.

Later on we went for a little walk, was still hard to walk and stand fully upright due to the cut down my belly. Nevertheless we did a few hundred meters down the road and back, and this less than a week after the operation.

Sadly, when I got home I felt absolutely knackered out, and had to go and lie down. Not long after that I was really sick, which really hurt where the incision was made.

There is a part of the post op experience that is like some accounting exercise, in which you compare what goes in with what comes out. I need to get Banquo going properly, so I need to eat FOOD. But I’m not hungry, and the thought makes me feel queasy.

I ate a few bits and pieces but actually even a fledging in the nest would be hungry at the end of those small morsals. This is something I need to work on. I just want liquid, but I need to eat more substance.

So now starts a new part of the experience in which I try to navigate my way back to strength and my real life.

One week after the operation now, and I feel I’m making progress. Today I walked all the way into town (2.8 miles according to the internet), did a bit of shopping (lamb chops) bus home, two visitors, cooking and eating said food. It feels good to start the return to my life. It will not be the same but it will be more mine.

25-12-2009

2009-12-27T07:32:00.000-08:00

Christmas Day dawns in E14. There is a noisy change-over of nurses as they wish each other happy Christmas.

I get up, and move slowly like a wounded animal, down the corridor to the shower. I want to look bright and alert for the ward round, as healthy as possible.

Ivor had an intense discussion with a doctor last evening and he has discharged himself. His friends will pick him up at 8 am.

Martyn is nearly obscured by tubes, just some crazy white hair and eyes visible.

Steven has had a difficult night, and has an overactive stoma. Show off!

Another cup of tea, and I try to eat some of the hospital breakfast. There has been some stupendous farting but Banquo has yet to deliver a soliloquy.

Ward round. The doctors gather round my bed. They have been discharging everyone they can. The consultant looks down at me.

“Working yet?”

“Just farting”

“Feel OK?”

“Considering . . . yes I feel OK”

“OK then you can go”

They move onto the next bed. I start to look for my mobile and ring Clare.

How incredible. To think that I am getting out only 4 days after surgery. I am very pleased. Very pleased.

There was then a number of visits from the pharmacy, and instructions on what to do next and who to contact. It was probably only an hour and a half later that I left the hospital. Pushed down the corridors by a tiny nurse called Fatima with a scarf over her head, with Josh lolloping alongside carrying all my stuff. Out into the cold Christmas air and into the car. Back home.

The irony is that as soon as I got home I went to bed just as I would have been in hospital, but your own bed is different.

I slept.

Silent Night

2009-12-27T06:47:00.000-08:00

There’s a strange kind of unity and bonding that happens in a hospital. The other people who lie around you, in their beds like ships sailing out into the unknown, they become almost like family.

After a few days they are no longer strangers, but people you know. You have watched them struggle through the night, seen the way they deal with people and circumstance that comes to their bedside, know their fight, know their medication, drips, preferences. It’s profoundly human to watch others, but this is not people watching in a café or holiday market. This is real – people dealing with the base reality of who they are. That really is profoundly human.

So I became quite fond of my fellow travellers.

You also get to see the Nurses and Doctors, and they can be brilliant. But somehow they are always and inevitably in a different tribe. Part of that majority tribe. Inevitably there is a power relationship of some sort going on.

When Steve the fellow “osteo-mate” asks how you are today it is not the same as a nurse or a doctor asking you that question.

My approach is to make sure that I give something (not physical but human) to every person that comes to my bedside and that I take something similar from them. To make sure that every exchange has value and meaning.

I have named my stoma “Banquo”, an unwelcome guest at the party, but essentially a good person despite his gory appearance. It was very difficult to stand up and move about at first because of the long scar down my belly which impeded so many actions. I awoke fitted with a bag, and with the scar covered by a dressing. But after a day or so the dressing was rather gory and wrinkled from being in the bed. So I took that off in that in the shower.

Eating was difficult, and I hardly ate anything at first. I mean really nothing. Why would you? Black tea was good, and I was really thirsty and wanted squash and water all the time.

Every morning there is a ward round when the senior doctors come and check your progress. Initially Banquo was not working, but for some occasional dramatic farting noises. They wanted to make sure the stoma was working before I went home.

In the dark Christmas Eve of 2009 in E14, Martyn opposite me rings for a nurse, Ivor mutters quietly in Russian, and I read through eyes that are gritty with lack of sleep.

In the early hours I eat a tiny amount of yoghurt, and some jelly. Put something in to get something out.

A nurse brings me black tea in the strange flourescent dark that you get in a ward.

"Alright?" she asks me

"I'm worried the stoma doesn't work - aprt from farting"

"You'll be fine. If you're farting it's working"

"I want to go home"

"You will; soon"

She dissapears back into the corridor, and I sip the tea slowly and eventually fall asleep.

What happened next . . .

2009-12-25T09:43:00.000-08:00

I can't actually remember coming round. I know that I would have been in a recovery room first, but actually the next thing I can remember, after being put under, is being wheeled back into the ward. I think I must have been high as a kite. I have a blurry vision of Clare; she's told me that I kept pressing my PCA button and passing out, waking up . . . . Saying something and then pressing my PCA button and passing out, waking up . . . . Saying something and then pressing my PCA button and passing out, waking up . . . . Saying something and then . . .

I can vaguely remember some of this. Clare says I was "off my head"

I was making so little sense that eventually Clare decided to go home and let me sleep it off.

That night I actually slept on and off, waking to press the button and acquire more morphine. A surreal night of strange thoughts and images.

Wednesday morning came, and after breakfast (cold ready-brek), Clare came in and she was told quite smartly by one of the nursing staff that she shouldn't be there.

Poor Clare, had been under a lot of pressure, and this was the last straw. I think it is easy to forget, when you are the one on the "pointy end" of the experience, that there is inevitable stress on the people around you and supporting you.

In fact through conversations with Clare I have realised that in many ways you can drag people around you down without being aware of it. I'm sorry to have done that.

That day there were a lot of visitors and a lot of texts. A text when you are in hospital can make a big difference. It is a bridge and a connection back to your own life, and people. Small but hugely important.

The day passed and I was very tired by the time last visitor left, and the ward lights dimmed to night mode. Despite my tiredness I did not sleep very well at all. A weird bed, a leaking drip, a restless mind.

The experience of surgery really takes it out of you, and it takes longer than I want to heal up. This is not some mere haircut, this is a major piece of surgery.

Until tomorrow.

THE LONG NIGHT OF THE SOUL

2009-12-24T10:37:00.000-08:00

I had expected the night before surgery to be long and tortured, I had been called in early for a blood tranfusion but whilst we were there; the blood was not. It was going to be an eight hour infusion and the blood did not arrive until midnight. But once I was connected up I was surprised that whilst I did not sleep very easily (the infusion not allowing me to get into a comfortable position) calmness came quite easily and was not infected by spectres and Heeby-Jeebies.

I found that the next morning became progressively more frightening as the process unfurled itself. Interestingly I found that I became slightly less able to cope when Clare was there. The familiarity and love being so close, but unable to "save" me.

The anaesthatist came to talk to me, asking many questions:

Name?
DOB?
Allergies?
Any loose teeth?
Medical history?
Previous surgerey?

Etc, a fairly long set of questions. Then it was a case of explaining anesthesia and post op pain relief. I opted for PCA (Patient Controlled Anaesthetic - or was it analgesia?) for after the op. By this time I was getting some bad nerves and was sweating considerably.

The surgeon arrived, wearing a bow tie and introduced himself as "Shanks"

I was in what my Dad's generation would have called "a terrible funk".

I was first on the list so with hardly any time to orientate or re-orientate I was off on the journey down into the dark.

There was a kind of waiting room that was just like a car-park. Here there were a number of people lying on beds, presumably in a state of panic as well, maybe not? I was blind with fear anyway.

I tried to remember the experience of hypnotherapy and started to breath deeply and think of Dad. A woman loomed over and introduced herself as "mickey" and she informed me that we would be walking the last bit. So I got off the bed and walked with her.

She said I would forget her, that everyone does. But I have remembered. She was called Micky and she had red hair.

Next I was in the anesthetic room. A needle was put in the back of my hand and ....

Welcome to E14

2009-12-23T14:31:00.000-08:00

Admission was always going to be unsettling. Clare and I entered Ward E14 with bags and, for me at least, that now familiar note of fear.

Clare sat on the chair next to the bed and I lay on the bed in civilian clothes. Trying to hang on to my identity until I have to relinquish it. Waves of anxiety break around me, but because Clare is there, and because I have recently been in a similar ward in the same hospital even this small familiarity is a comfort.

I have noticed, in the last year, that each different ward has its own mini culture. This one has a feeling of being on the front line, much more than the last one I was in. There is more meticulous checking, questioning, and note taking.

Because I have come in early for a blood transfusion before the operation, it becomes clear that I'm going to have to get into my pyjamas. I reluctantly get changed and emerge in the unmistakable uniform of a patient.

The time for Clare's inevitable leaving came and I hugged her goodbye. I was left to contemplate my new surroundings - E14

The area I'm in is the red area. There are 6 beds, each is provided with a privacy curtain. The design of this curtain is made from various Nottingham locations of note.

I am in bed Red 1.

Red 2 is occupied by a man called Frank, an older man, sporting tight green socks.
Red 3 is obscured by his curtain and sounds a bit like radio 4

Red 4 is a man called Steven who is also obscured by his curtain, and spends a lot of time shouting.

Red 5 is a Russian man who seems to have trouble with his legs and likes to clown about, although in repose his face looks quite un-funny.

Red 6 is an older man with long flowing hair and a London accent.

So here we all are in our strange little worlds of pain and flesh. I am really tired and I have to stop now. Tomorrow is the big day, and if I think about I will crumble.

Tomorrow my colon really will come to a fullstop.

Admission

2009-12-21T13:39:00.000-08:00

This unexpected and early admission has got me in a spin. Suddenly everything is too fast, and ahead a long lonely night.

I arrive at the hypnotherapist's street eased already by the familiarity. It is muffled by snow, I get the Christmas/Thank You flowers out of the car and scrunch my way towards her house. Opening the wrought iron gate sqeaks on its hinge.

In the room, now familiar noises greet me. The hiss of the fire, the tick of the clock, and now a Christmas tree as well. She used to be a nurse and so is familiar with the kind of process I am facing. This inside view is very comforting.

At first it is just a conversation but as always she asks questions which make me think, reach back into my memory, and reach forward in my mind. Not as simple as it seems - this conversation.

Then relaxation followed by a journey in the mind, some of which I don't really remember. A journey to a peaceful calm place.

Next a drive home crawling through the rush hour traffic trying to steady my thoughts. Back home cook some egg fried rice. Eat. Then shower letting the water heat the skin and calm the nerves.

Saying goodbye to my oldest son, who is engaged in some weird game.
"Until we meet again" I say
"Only a few days" he says

Leaving the house with a lump in my throat. Clare drives, I try to breath like the hypnotherapist has said. The journey into the dark has started.

Everything changes so suddenly.

The unexpected trips me up.

2009-12-21T04:58:00.000-08:00

I'm sitting here all stressed up in anticipation of tomorrow, when the phone rings.

It's the hospital with an unexpected ball to bowl down my alley. They want me to go in this afternoon and have a blood transfusion as my hemoglobin is low.

But this afternoon is too early for me I'm afraid. I just can't quite take that. I have got my brain all set for tomorrow. And I'm going to see the Hypnotherapist this afternoon, and I need her help. So we agree on 6.30.

It's going to be a long and lonely night, and I will think of you, and you, and you, all my precious people.

Until I see you again, remember:

Love is Life

High Anxiety

2009-12-20T00:59:00.000-08:00

I have to admit to some moments of very high anxiety in anticipation of Tuesday, I suppose you would a fool or psychopathic if you did not. What can you do to minimise the pre-op nerves?

Of course it is not something that has physical form so the stone age body that we have is at a loss for a response to the surges of adrenaline. So going to the gym for a good pedal on the exercise bike and swim and hot sauna does help. It gives your body something to hit out at.

The hypnotherapy helps too, although you have to remember to use it when you are in the grip of anxiety. Deep breathing and remembering the image, and using the anchor.

I also have remind myself that there are 150 people a year going through this at this particular hospital a year, that it only takes an hour under the knife, and that I am on an "enhanced recovery scheme".

And I have to remind myself that one day in a few weeks time I will wake up and I will have got used to the new me and everything will be OK. That in a few months time I will sit at the edge of my garden pool with a glass of wine and some friends.

OK that is that for now.

(Written on my Mum's computer in Gloucestershire, and without any image capturing device to allow the inclusion of a pic. Maybe later when I get home.)

The Heeby-Jeebies

2009-12-17T06:58:00.000-08:00

I awoke with Heeby-Jeebies, and went for a gym-and-a-swim session to work it off. It is strange seeing the mark on my tummy indicating the site of my stoma to be. I got on the exercise bike and peddled fast.

Then I sat in the steam room and tried to use my head.

I have a comforting image that the Hypnotherapist has activated in my mind. I am a child, and it is early morning; about 5.30 am or something. It is a summer morning but the air is cold and stings my nose. I am with my Dad, and we are going to milk the cows. I am sitting on the mudguard of the tractor (never be allowed now) and we are chugging through the fields. The grass is fresh and green and Mary, a sleek black Labrador, runs along side the tractor. A pigeon flies over head and Dad makes his fingers into a pistol and pretends to be a cowboy shooting it out of the sky.

The image changes and he is standing next to me, he's wearing the green coat that I now have. He is my guide and will keep me safe in the dark. He tells me why it will be better after the operation:

"Well, at least you won't be goose-stepping to the loo every couple of hours, and you'll never get the big C up your B; you'll be able to eat any damned thing you want, and best of all you'll never have to have a camera up your backside again. So hold my hand - I'll come with you."

I hold his leathered and weathered hand which is rough with wear.

And it helps the Heeby-Jeebies subside.

Pre-admission assessment

2009-12-16T10:59:00.000-08:00

To be honest I found this a rather unpleasant experience. It wasn't because of the people, they were all doing their jobs, it was because it makes you focus very clearly on what is going to happen and it really brings home the fact that it is going to happen.

The first person we met was a Stoma nurse, who talked us through the mechanical details of a stoma, the procedure and other such details. This made feel faintly sick and actually consisted of information that to be honest I mostly already knew. I could see that is important to have this conversation from a systemic point of view.

There was one slightly strange bt of dialogue when John said

"We are very good at causing pain, and we're very good at taking it away again . . ." which I have to say I found a little unsettleing; reminding me of a scene from the "Marathon Man" - the torture scene between Dustin Hoffman and Laurance Olivier:

Olivier to Hoffman:
(Having just drilled into Hoffman's tooth)

"Simple oil of cloves and how amazing the results. Life can be that simple; relief - discomfort. Now, which of these I next apply, that decision is in your hands, so ... take your time and tell me. . . . is it safe?"

There was also considerable discussion of, and viewing of bags. This made me feel even more odd, although I had seen some before. We discussed how to maintain, empty, replace, pay for these "fashion" items.

"Now I have to site you" he said

"Pardon?"

"We have to decide the site of your stoma"

I had to pull up my shirt and the position of my waistband, was noted. We had a brief conversation about lifestyle which included things such as my daily swimming, and he drew a black blob on my tummy to the right and below my navel. That done we were off upstairs to another department.

Upstairs I was welcomed and we were shown into another small office where a very professional, intelligent and human nurse went through more details.

I have been put on a fast recovery plan, and I was given some drinks with lots of "good things" in them to drink before the operation. She took my pulse and my blood pressure as well.

Then she brought up the question of MRSA - had I had it at all? and other such questions. Then she said I was going to screened for MRSA and that this would involve a swab up the nose (fair enough) and a swab of the perineum (How do they manage to come up with such elegant forms of humiliation?) I started to feel really nervous about that.

Then another nurse came in to do the MRSA swabbing- the swabber. I was OK with the nose which tickled but all the time I was thinking "Yeah . . . ? And . . .what about the next bit . . . " Luckily I was allowed to retreat behind a (hideous) curtain and do this myself.

Next it was a doctor who came into the room and interviewed me. The stuff you would expect really. Medical history, relevant medical history of relatives, smoking, drinking, allergies, etc. Then there was an examination on the little bed.

On spotting the dark circle made by John she asked

"How long have you had this mole?"

"What mole?" I looked down my body - "Oh! Hah! you got me there- anyway it will be bigger next Wednesday. Ha Ha!"

"Why?"

This time I wasn't sure she was joking, and I reflected that she seemed very young and that many of her questions had seemed a little odd. Not only that I had seen her with an older doctor earlier and he appeared to be briefing her.

It is a teaching hospital, and I of all people believe in learning and teaching, but I have to say I felt a shiver of . . . well actually it was fear.

FEAR for my tiny little fragile self. How pathetic! "Pull yourself together man!"

And here is the thing; I might look like i am 53, 6 foot, hairy, and all that other grown up stuff; but inside we are all vulnerable and emotional children. That includes the doctors.

After that it was just a matter of blood tests and an ECG. A piece of piss you might say - oh no I did that earlier.

I am fit for surgery!

I can't wait. . . .

The Hypnotherapist

2009-12-15T10:38:00.000-08:00

This morning I went to see my hypnotherapist. Does that sound a bit new age and odd? As they say - don't knock it till you've tried it.   I first saw her sometime ago as I was trying to deal with the prospect of a colonoscopy (that seems mere bagatelle now) and I can tell you that for me it was very powerful.

A beautiful and peaceful antidote to what I saw as the clinical brutality of the modern medical machine.

Hypnosis in reality is not like it is in films. They don't wave a watch on a chain in front of you, and the world doesn't go all wavy to the sound of a Theramin.

  Instead I found myself a very comfortable chair in a warm room, speaking to a quietly spoken and understated woman. She uses the technique of progressive relaxation. You close your eyes and she asks you to relax; your neck, your shoulders, and so on all the way down your body. Then she asks you to go more deeply still.

Here is the interesting bit, you know what's going on, but you are very much in a small perfect world of your own. Everything is clear and possible. She gave me "anchors" and these got me through the colonoscopy really well. I was able to get through the experience without even sedation.

Even now, 3 or 4 years later, if I drive past the hospital I feel some of the anchors come into play. A medicine to equal Medicine.  Hypnotherapy gives me a way of using my own mind and strengths as a repost to the procedural coldness of the medical experience.  

So, I have seen her quite a few times on my journey to this point, and it has been a most gentle and effective way to deal with very brutal and intrusive experiences.   Today I went to see her for the second time on my approach for the much feared, and anxiety inducing colectomy. I arrived in the grip of the heeby jeebies with the prospect of being disembowelled boiling angrily in my psyche. 

 I sat in the familiar chair and felt the warmth of the hissing fire on my face. As always, we had a bit of a conversation first - a conversation which as usual brings me into close connection with her, and which is in itself calming, non threatening, and positive.  

Then I closed my eyes and I relaxed and went into the strong and enabling world that she brings out of me. And although I still feel anxiety, and although I understand I have new and difficult borders cross, I drove away feeling that I had a way of coping that belonged to me, More able psychologically to deal with the impending challenge.  

So if you too are about to experience something really challenging and difficult I suggest that you consider finding a really good hypnotherapist.  For me it has been good.  I hope we all live to be 100.  

Peace

Dear Roger Knott-Fayle . . .

2009-12-13T06:17:00.000-08:00

"Please attend the Pre-Admission Unit on F floor, west block on Tuesday 15 December at 1400.

You will be examined by the doctor and any necessary tests such as blood samples, X-rays, or ECGs will be undertaken to ensure you are prepared for admission. You will have the opportunity to discuss the details of your operation and hospital stay with the nurse and doctor in the unit. The appointment could take up to four hours depending on tests required."

Letters like this are really frightening in their casual and bald statement of fact.

The letter goes on to tell me that on the day of admission for surgery I should arrive at between 0700 0730 hours and that I will go straight into theatre from the admission lounge.

Lounge? how do they come up with these phrases? Do they think I'm going to be casually lolling about in my slippers reading newspapers and chilling out?

Well at least they didn't start with the words

"We are pleased to inform you . . ."

The heeby jeebies come and go.

My head tells me I will be OK but the primal part of me feels as if it is going to be executed.

Nicky Nacky Nocky Noo

2009-12-11T10:26:00.000-08:00

For A laugh and joke on the topic please follow this link to a documentary song of jollity and fun that enumerates all the things that have gone wrong with me this year.

"Nicky Nacky Nocky Noo"

"Hello . . this is Mr Fitch's Secretary speaking . . ."

2009-12-10T05:59:00.000-08:00

As I lay in bed, in the secure and safe surroundings of my own house, all wrapped up in my own little life. The phone cut through the morning quiet, and it was the surgeons secretary.

My heart rate changed, although I had had a message from her on my phone the day before.

She wondered if I wanted the operation before Christmas?

I was just umming and gaping like a fish that had just landed on the deck of a boat.

"How about the 22nd of December?" I gasped a little more and tried to say something sensible

"It wont be Mr. Fitch, it will be Mr. Shanks . . . is that alright?" How would I know? I don't know anything?

"would you like to think about it for a bit?"

You bet I would. I would like to think about it for the rest of my life.

"Yep . . . that would be great . . . I'll have a think about it . . ."

"Will you be getting back to me today? It's just that I would like to sort out all the lists today. I go at 4 today by the way"

"Ok I'll ring you later"

Oh shit.

The day continued - I went shopping, I went swimming. Constantly calculating and recalculating the days, and trying to estimate the earliest I could get out of there by. Clare rang lots of people up who knew people who worked as nurses etc. She ascertained that the care would be as good at Christmas as any other time. She started to make jokes about the surgeon being dressed as santa and all his nurses etc dressed as elves. Very funny.

Later I rang the secretary back and I committed myself to 22nd December 2009. Shit! Shit! Shit! I feel as if I am suddenly very high up in a plane and very soon they are going to open the doors and throw me out.

It's going to be an interesting Christmas.

Luckily I bought myself o hat on E-Bay, and it arrived yesterday. I have found that wearing it makes me smile a bit, and that in turn pushes away the heeby-jeebies.

Yikes! The hospital just rang me again. They are on my case already. I have to go for an assessment to make sure I am fit to undergo surgery. Next Tuesday! Yikes and double Yikes!

My "Stoma Buddy"

2009-12-06T06:16:00.000-08:00

The bed I was in at Queens Medical Centre earlier in 2009.

I had been given the number of someone who had been through the operation that I could ring and ask questions. My "Stoma Buddy" as my wife referred to him.

It was with some trepidation that I rang, as it's not usual to discuss the minutiae of personal plumbing with someone you have never met; however one thing that UC can help you with, is coming to terms with yourself and your bodily condition. So I rang the number.

A busy and positive voice answered the phone. The first thing he said was that I could ask him anything I wanted, and he reassured me that there was nothing that could embarrass him.

His story, in brief, was that he had had Ulcerative Colitis from 1987 - 2004; and as he said (and as I have discovered over the last 12 years), you can adapt to anything.

During his time with UC he was not really in pain most of the time, such is the case with me. Nevertheless he developed a load of coping strategies. Just as I have done; just as anyone with such a disease will do.

In 2004 it all came to a head for him, and he was admitted to hospital where he was administered to for 2 weeks. Then the consultant (my consultant as well) said it was really time for him to have the op. He was in a very bad way, and he had no choice. I, at least, am not in an immediately bad way; I'm not in pain, and I have got a kind of choice.

He described how the consultant waited with him for the ambulance to take him to the hospital where the op would take place. He spoke with great admiration of how she looked after him, administering the Temazepam at just the right moment. I tried to imagine her doing that.

So my "Stoma Buddy" had no chance to prepare himself physically or psychologically for the operation, as I have.

He said something very interesting about forums and researching Ulcerative Colitis. The trouble was, as far as he could see, that the forums were dominated by the same questions and the same problems, and these were mainly negative. He felt it was shame that there were very few positive experiences of hospitals, doctors and surgery described on these forums.

He was offered a choice of anaesthetics, but of course he didn't know what was best, so he asked the anaesthetist what he recommended. Epidural was the choice, so he took that. Afterwards he was on morphine with some kind of pump that he could control himself to give pain relief.

Recovery, he said, in his experience consisted of about three horrible days, and then you feel better. However he developed a hole in his stomach - a fissure - and this meant that he spent more time recovering.

But he also said that after the operation he felt amazing, and felt as if he could run a marathon.

Life with a bag, he says, has its problems. Learning to accept it is the most difficult thing, he felt that everyone was looking at him all the time, and that it was difficult to be intimate with his wife. He had a few accidental leaks, and sometimes a bag would come off. But this was solved as he got more used to dealing with and using the bag. Cutting the hole in the neck of the bag the right size seemed to be crucial (2mm wrong and it could be a problem). He would always have a towel on the floor when he was showering as he could easily spring a leak and he talked about it taking about 45 minutes a day to get sorted and dressed.

He has since had a pouch constructed, and now feels absolutely fine.

Meeting the surgeon

2009-12-01T10:22:00.000-08:00

Today I met the surgeon. It is a strange feeling having a rational conversation with the man who will cut your guts out. It was OK, and he even cracked a couple of jokes. So I felt a bit better.

So here's the hard information:

1 ) I am having a number of drugs such as Infliximab, Asacol, Thiamin etc. I am going to be carrying on with these until after the surgery.

2) I was concerned about my level of fitness, and I explained that I do about 1 hour of cardio vascular most days, and I am told that I am more than fit for the op. In fact many people who have this are in a pretty bad way. The good thing about being fit is that you get out quicker. That is what I want. In quick - out quick.

3) I'm also hoping to actually meet someone who has been through this surgery and I was assured that this would be possible soon. That will be really helpful I think.

4) I am warfarin as well, so this is going to have to be addressed before surgery.

5) I don't have to take bowel prep! Brilliant - I hate that stuff. It's like drinking cold sweat! Yeaach!

6) It is going to be open surgery. They will cut down between the stomach muscles - the ones that form a six pack if you have one. He said if it was him doing the op it would take about 1 hour. You get the op the day you go in and it takes about 6-7 days to get out. The fastest he ever saw was a woman who was running an aerobics course 1 week after the op. Wow!

7) They will take out most but not all of the Colon.

8) The position of the stoma depends on your lifestyle and your clothing. It is a bespoke scar just for you.

I hope this may help anyone else facing this experience. It really is a bit odd. If you too have UC I hope you live to be 100 and I sign off until I have more news.

2009-11-29T03:26:00.000-08:00

Ulcerative colitis is a shit! It robs you of confidence and mobility and more. I am 53 and I have had it since I was 40. This year I have had two mortal scrapes, I don’t plan to have a third.

So after many tortuous hours of soul searching I have finally submitted to the knife. I am going to be disembowelled.

This is the story of that journey.

At the time of writing this post I have simply put in process the chain of events. Now I am in a kind of limbo, next Tuesday I will meet the surgeon and my consultant and the process will start for real.

Yes, I’m scared. I am a big hairy man. I am grown up, I have kids and a wife, I’m not phased by giving a lecture, I have had operations before. But I am scared. There’s no denying that.

Come with me on this journey and maybe we’ll all learn something.